Welcome to this packing vlog. Started it off packing and I'm going to show you guys now what we got going on here. Okay so first off, most of this stuff and that stuff and the bag over there was all of the storage underneath my bed.  Let's just say that. Then over here we have important documents and stuff. Very important, okay? Like, littlest pet shop is very important and I kept all my favorite toy animals and I had this cute little thing to put it in. I keep in here all my keepsake memorabilia like, I don't know, I feel like everyone has one of these. Your best friends in elementary school will get you a card, you keep it. I don't know. This is probably my most special box and everything. Then over here we have seasonal decor. I went through everything and just kept what I wanted to. Then we have my dresser stuff, nightstand stuff. In here we have more dresser stuff that was on there and then wall.  This is all trash. Again, like I've gotten rid of a lot of stuff and yeah, so basically these are all cleaned out. There's nothing in there anymore. This is stuff I'm just going to drive myself over to the place because I don't want Sandy the sand dollar to get hurt. I've had this thing probably since third grade and then I've had this shell since 2015. My friends and I went to the beach and we have garbage in here which I might as well just dump in that bag. I threw away a lot of my apple boxes and stuff because I just don't need all that. Over here, I don't know what I'm going to do with this. It's not going to go in my room in the next house. Then I have my lotion here. I haven't packed that because I still use it. In here, nothing and then the closet is just basically like clothes but I've like consolidated things. I put a lot of stuff in those bags with my Christmas trees back there but overall like this stuff, it'll be pretty easy for them to pack. Just like put it in the big boxes and haul it over there. Okay, we're at the house now because my mattress came. I'm just getting ready to put together to rest the couch. I've been on the phone with Smart City. Okay, oh my mattress. Yay. This is the temperpetic. At least I have a place to sleep now. All right, so Valerie's finishing up, setting up the couch. Look at this. This is the other end of it, right? Yeah, it's a little polished up so it looks quite stabby. Oh, she's adjusting her look. All right, let's see how this goes on. Okay, so this is part of the moving vlog. I never get an open versus open here. Here, you want me to do that? No. Because I've done it like multiple times wrong, so why stop now, right? True. We don't need this one, so we're going to put this one in here in case we have everything of expanding this, which I don't think we can, but you know, one never knows. So these are my spare parts. First thing we do is we take these feet. Peg legs. That's right. We turn this over. Very light. We put in the feet. Nice. Oh, they just screw in. Oh, nice. I'm telling you, it's an engineering marvel because it's put together with screwing things in, Velcro, and zippers, and clamps. I mean, it's really quite a deal. Felt feet, felt feet, felt feet. She gets a kick out of that. Next, probably the cover. I actually have the cover. So this will be very entertaining to watch while I put this on. Okay, so this cover is the hardest one of any cover. Why do I know that because I did that one, and I broke out into like sweat. That's why I'm filming now. Rolling down my whole body. I'm happy that I came over so I could film you putting on the hardest one. Now the rest of the zippers don't eat this, so let's see, I gotta remember what you ate this time. And some of you may ask why I'm not helping, I'm helping film, and I am here for emotional support. And anyway, Valerie's done this, and I haven't, so honestly, just saying, you know, she's reviewing on the box. Yeah, this is what I'm gonna have to review the instructions again. Okay, so you gotta make sure that you have the zipper side on the correct side. Oh, did you do it the opposite way? Oh, no. The way you do that is there's a big hole here, and this is the part that goes against the couch. Oh, it clamps, the clamp thing, right? Yeah, right, that's where the clamp thing goes, and you can see that they don't put the covering on when you go to see it. It's so funny, Sherry was like, oh, we have to put the covers on? We have to get these things lined up because they're very snug. Yeah, I can tell. Okay, just, this only took her about five minutes, honestly, not as long as I thought it would take her. But she says there's a little maneuver. Wow. Oh, it is. Oh, wow, it is strong. Wow, look at Valerie. She's like muscle woman, even though these aren't that heavy. Honestly. You want to try it? Okay, let me try it. See how heavy it is? Okay. Oh, that's not heavy. But I'm trying to get the fifth one. Okay, yeah, I know, I don't want to do the fifth one. Okay, so now, Valerie's always had good upper body strength though, I must say. And see these right here? Yep. Wait, where's the clamp part? Well, the clamp is going to be, what we're going to do is we're going to take this off. Okay. Can you move the coaster thing there? Yeah. To the other cushion? Yeah. Oh, there are two clamps on this side, I forgot. Yeah, there's only one clamp on this side. Okay, that's all right. Okay. Yeah, they go into this like wooden thing. Huh? You just got to work it around a little bit. Oh, perfect. Okay. Yeah. Here's the clamp. Did I take the clamp? Looks great, Valerie. And then where do you put that? Oh, right there. Like that? Yep, and then just give it a little push on the sides. And it'll velcro itself down just too. Oh, and then in the back. And then you can put that and then you put that. Okay. I'm sorry, I wasn't doing a very good job here filming you. You can put that and you can put that. There we go. Now you can put the coaster there. Oh, how cool. There you go. Okay, so this is to continue on the moving vlog. So we're getting all of these plates like stacked up and everything. And organized. Actually, Sherry is, I'm not really helping that much because like I'm really, really tired and not going to lie. So anyway, but yeah. So we're getting all that taken care of. Valerie over here. I don't know what she's doing. She's getting something organized and we're basically like working on the glassware and stuff. Sherry was telling me about these glasses she got on a work trip. They are pretty cute though. Not going to lie. The phone situation, I'm not even going to tell the story about my phone is all fixed and good now. And I already transferred everything to Sherry. So I was like worrying about that. I showered, washed the hair and just uploaded like some of the gaga footage from the concert to Instagram. If you follow me on Instagram, you'll already have seen it obviously. I don't know when the vlog is going up. Everything is kind of like getting pushed back because of like the movement stuff. And honestly, my just my tiredness. So today is just like, I'm a slug. All right. I love my new phone. The camera is amazing. I have such good footage from the concert last night. So I'm really, really happy and grateful for the camera on that thing is so good. Valerie, do do that one more time. The moon, the mooning. So Valerie was doing this on Instagram. So I'm going to have her do it on the vlog. Right. Go ahead. Action. We're throwing away this diorama that I made. There's Jupiter. Jupiter where boys get stupider. Where boys are stupider. Why do girls go to bars? Why? Go to bars. Go to bars. Yeah. If you want to see the diorama in full, then just follow me on Instagram. All right, Sherry. Tell us what we're doing. I think we can find bedding for Alex's new bed. Yep. So it's been a while since we've come to a target, but now we're going to be living like kind of closer to one. So that's going to be fun. I already know what bed sheets and like duvet I want. So it's just a matter of like finding them and buying them so then we can like wash them everything tomorrow because on Tuesday it's our first day to like live in the house. Basically like we're officially moved in by that day. So I need bed sheets. Don't really have anything else that other than a mattress and a mattress. That's it. So I need like sheets to fit on it. So I have some screenshots. They're basically the same sheets that like Taylor Karen's best friend has. It's just like basic and it's not that expensive. So that's why I'm going with that. So let's see. Yeah, let's get a cart. Guys, the Halloween stuff is out. I'm, oh my gosh, it's kind of bad that I live closer to a target now. I mean, look at this. We need to stay focused. Look at the fall pillows, Sherry. All right. Let's stay focused and just go to the bed sheets. Oh my gosh. All right. So here's a little update. I found the sheets. Thank goodness. I thought that they were going to be all out, but this is what I got. I got the Casaluna Supima Satin Sheet Set and it's in the color white. Super nice. Super like lightweight, but it's like still cottony. I don't know. And then this is the little duvet cover. It is the linen blend duvet cover set. And it just looks like that's a little off-white. We're still looking for the insert. So I got this black trash can because it matches the details in my room. And then also I have this wicker basket for my bedroom. These both are like $23. And I'll link all this stuff down below if you guys want to check it out. But this matches like my room so well because it like matches my floor. So we added those bath mats. Sherry was asking me. I don't think they're the vibe because I love my like memory foam. Okay, so we didn't end up finding the like alternative comforter. So basically we'll just order that online. Alright guys, it is the next day and I just wanted to give you like a little update. Show you guys we are waiting for the movers, but everything's pretty much packed. Oh, that's where my other bra was. I need to put some clothes away. But yeah, it looks like Christmas, but it's not Christmas. Oh goodness. Sherry, you ready? Not really, but I guess we're going anyway. We're never ready enough. Nope, nope, nope. Okay, so our moving people are here. So they're basically like packing everything up and everything. So I love it that they parked there because we've had some drama with the neighbors about like, you can't park there and blah, blah, blah. And our moving trucks are parked right there. I hope they get mad because they kind of deserve it because they were mean. So moving trucks are here. I might get a thumbnail. You know what? I'm going to do that right now. I'm going to get a thumbnail so it'll be like cute and fun. Alright, so I got a cute thumbnail.  Yeah, I'm so excited. Still, love it that they parked there. It's like gold. Oh man. Alright, so my camera battery died, but just washed the sheets. Look at them. That's some underwear on top, but they're really... What? Yeah. So they're actually like really a lot softer than I thought they would be. So I recommend, I recommend. Progress has been made. Look at this, man. Alright, so I got a new camera battery, but I just wanted to walk you through. Oh my gosh, the movers did such a good job. They've come so far with all of our stuff. This is what it looks like so far. And everything like that. Look at how many boxes, man. Like it's crazy, crazy, crazy. So I don't think the bathrooms are... Oh yeah, they got all that stuff. So crazy. I haven't really been so like involved in like seeing all of this process. I mean like very briefly I've seen it, but not to this extent. So it's pretty neat. Sherry and I had a little Panera date. We just got Lemonade. Sherry was craving it, but like look at my room now. This is crazy. I guess I like just literally packed everything and closets empty, everything. And then these obviously like I emptied beforehand and everything. So the study, oh my gosh guys, crazy. They need to get a little bit more book boxes for this room, but I still can't believe how much progress they've made because I could never... Look at this. Yeah, no, I could never like do this, be in this industry.  And because we have to spend the night somewhere else, we're staying one night at Disney's Saratoga Springs. All right. So we made it into our room, our one night room, a quick little room tour. So the door of this body sized mirror. We come in here and this is the bathroom. It has been remodeled as well. We have the little kitchenette area here. Super cute. And then we have just the upgraded sink and closet area. Looks good, looks good. And then we have like the main room with the bed and then the sleeper sofa. The sleeper sofa, this one just pulls like straight down. Like all you have to do is like pull it down. There's a Valerie, there's a Sherry. And then we have this really cool view. So this is the beautiful view we have of the lake. Very cute. Perfect little sleepover area. All right. So this is where we are eating. And yeah, I guess I'll vlog whatever I end up getting. But there's also like a really cool shop here. They have like a shop and then a food place. Oh my gosh, on the cheese, Donald Duck. So mothers got salads. I got a salad too. It's not here, but I also got some Doritos. I'm having a chicken Caesar because it's just like what I get. But I also want some Doritos. So that's why I didn't end up getting pizza because pizza was a little heavy. So I just decided to go with the chips. I know, I know it's just like facing dilemma. But hopefully the mothers enjoy their pizzas. Good morning guys. Happy moving day. We are leaving now to get some breakfast. Valerie wants some McDonald's and this is what I'm wearing. So yeah, let's get on the road. I'm probably going to sneak out to get some Starbucks. If I'm being honest. Maybe I'll take Sherry with me. And now today is when they actually like move the boxes. So yesterday was packing and now they're loading everything up in the truck. So hopefully I can get some good time-lapse footage. Hopefully I don't forget my camera out here. But I want to get a cute, like a, I want to get a cool time-lapse. So let's see. Forever since we've seen this empty garage. But everything's out. And it's a party out here. Sorry I didn't get a lot of footage of like the movers and stuff. I don't know. It's just always kind of awkward, especially when you like, they're really, really cool people, but I didn't want to make anyone feel like super uncomfortable. But I hope you guys like the little time-lapse I got. It amazes me like how they can do that. Like I could never do a job like that. I feel like because it's just, they did a really good job and just, I don't know how they do it. I commend them. They deserve to be tipped and all of that. Definitely guys, if you ever like hire movers, don't forget to tip them because they are in the service industry and they like work really hard. Like trust me, I could never do what they do again. But now we are on our way to our new house and they're going to like unload all that. Sharing it are very like scared that not everything's going to fit. But we'll see. I'm nervous. All I need though is to unload. We need to unload the clothes so we can give back those boxes or whatever. But also too, I need clothes to wear tomorrow to work. That's all I need. Like I was like thinking, okay, we're having our first night at the new house and that's great and all but I have to work the next day and all my clothes are packed.  So I'm like, great. So that's just going to be like top, probably one of my like top priorities. And then obviously putting bed sheets on my bed. Like that's really important too. So it's like literally a mattress on the floor like you saw. So you know, this is just a fun adventure and I'm really, I am really happy and grateful that I get to be more part of this. So anyway, I'm going to stop rambling now. We're on our way. I'm so excited and I will vlog at the new place when we get there. Okay. I haven't updated the vlog in a while, but this is our dealing win. We have so much stuff. This is supposed to all go upstairs by the way, but this is the layout so far. I haven't really like been filming a lot because we've been just like everywhere and stuff. So, but yeah, this is what is happening so far. Good times. Okay. I'm looking really rough, but I'm just coming on to end the vlog. We got a lot of unpacking to do. Crazy. But we'll get through it. It'll be all good and I'm excited. This is our first night in our new house. But anyway, I hope you guys enjoyed this moving vlog. I'm going to start another vlog. Probably like the unpack unpacking vlog. So make sure you give this video a thumbs up. Don't forget to subscribe. And I'll see you guys in my next video. Bye.


Hello, and welcome to Mighty Cause. We're going to be going over how you, as an Orc admin, can create a new campaign for your organization. You first want to make sure that you are logged in into your Mighty Cause administrative account and head over to your organization profile page. There are a couple of ways that you can create a new campaign on Mighty Cause. The first way is right here on your Mighty Cause organization page. To start a new campaign, select Fundraise. Creating a new fundraising page on Mighty Cause is a great way to share with your community and supporters your campaign's mission. So let's get started and let's build our fundraiser. Here is the canvas of your campaign. Your left-hand side dashboard will give you all the tools you need to begin editing your fundraiser. You can start editing your page by adding in the essentials, such as your title, image, description, and funding goal. Once you're finished editing your fundraiser, you can go ahead and publish. On your left-hand side dashboard, go to the rocket icon. Once you've selected publish, a pop-up will open up asking if you want to continue to edit or publish. Great. You've now successfully created and published a campaign. You can now share with supporters, friends, family, and on social media. To review all of the campaigns your organization has created, head over to your organization profile page and select on the left-hand side dashboard campaigns. Any fundraiser that your organization has created on Mighty Cause will be listed here for you to review. You can also create a new campaign through this section. Simply select the plus sign on the right-hand side. Lastly, regardless of what page you are on, you can always create a new campaign for your organization by placing your mouse on the plus sign on the top left-hand side of your Mighty Cause page. Simply select Start a fundraiser and you will be prompted into creating a brand new campaign. Congratulations on creating your new campaign. Good luck and happy fundraising.


Beginning at verse 9 in 1 John chapter 4 and reading verses 9 and 10, John writes in this, the love of God was manifested toward us, that God sent His only begotten Son into the world that we might live through Him. Not that we loved God, but that He loved us and sent His Son to be the propitiation for our sins. And so we gather tonight to celebrate Christmas Eve together as a church, as a church family. When we think of Christmas we might think of family and friends, we might think of gifts and a lot of food, and all of that's great, and all of that is part of the celebration of Christmas. But we need to obviously remember the true center of all of our celebration, and the center of our celebration will always be Jesus Christ. Billy Graham once wrote, during World War II, many a mother would take her son and try to keep the memory of the father who was away at war in the memory of that boy. And one mother I heard about took her son every day into the bedroom and showed him a large portrait of the father who was away. One day the little boy said to his mother, Mom, wouldn't it be great if dad could just step out of that frame? And that's what happened that first Christmas. The Lord God stepped out of that frame. The Bible tells us in the beginning was the Word, and the Word was with God, and the Word was God. And the Word became flesh, dwelt amongst us. We beheld his glory, the glory of the only begotten Son of God, full of grace and truth. Christmas is a commemoration of God giving to us his son Jesus Christ. Christmas is a celebration of God drawing near to man in order to bring the gift of salvation. It is remembering that God himself took human flesh and that he dwelt amongst us. When we think of Christmas, we think of a young man, a young man who was engaged to be married, but had found that his bride to be was pregnant. The Bible speaks of this young man, Joseph, as being a just man, a righteous man. And the woman he was espoused to, the woman Mary, had been found with child. And now Joseph needs to make a decision. The Bible tells us that Joseph considered quietly breaking his marriage agreement. And as he did so, an angel of the Lord spoke to him. It's found in Matthew 1 verse 20. The angel said, Joseph, son of David, do not be afraid to take to you Mary, your wife. For that which is conceived in her is of the Holy Spirit. So Matthew made it clear that this miraculous event was actually foretold in the Old Testament. In Matthew chapter 1 verse 23, it says, Behold, the virgin shall be with child, and bear a son. And they shall call his name Immanuel, which has translated God with us.  So the question obviously would be, why would he do that? Why would our God do something like that? Somebody wrote, humanity is lost, fallen. We were separated from God because of our sin. And our only hope of forgiveness was for someone completely innocent of any wrongdoing to take all the punishment for our crimes. Such a perfect life and a perfect love were impossible for any human to achieve. So God himself did it for us. He sent his son from eternity into mortality, from glory into flesh, from a throne to a manger. Ultimate hope was born in ultimate humility. That's the immense love that God has for us. And that's the love that was revealed in such an incredible way. God's son, Jesus Christ giving up the splendor of heaven to dwell with us, revealing the love of God toward us. Paul, when he was writing in 2nd Corinthians chapter 8 verse 9 said this, he said, you know the grace of our Lord Jesus Christ, that though he was rich, yet for your sake, he became poor, that you through his poverty might become rich. God came into the world he created to rescue those who rejected him. And as Christians, we realize the meaning of Christmas is wrapped up in one word. It's wrapped up in the word incarnation, Incarnate, in flesh. You see, the incarnation God taken upon himself, human flesh is something that we should meditate on and respond to. And yet the season can be such a hectic time. And because it becomes that way, it's good for us to take a moment to refocus, to gain our focus on what it's really all about. And Christmas is a time for us to remember that God loves us. That's what John is saying in this was manifested the love of God toward us, because God sent his only begotten Son into the world. So the central purpose of Christmas is to celebrate the fact that God demonstrated his love for us. And so it's a time for us to rejoice. We rejoice in the love of God because God has loved us and God has given to us the Son, Jesus Christ. If we look at the condition of our world, our nation, our state, our cities, or even our families, we can lose hope. We may very well be overcome with sorrow, a sense of helplessness and even hopelessness. And when Jesus becomes absent from Christmas, then Christmas has no meaning. Christmas becomes an excuse to have a party. It becomes just a time to get something for ourselves to give a little, perhaps, to leave work early, get out of school, spend some money, overeat, get frustrated, get stressed, and ultimately to complain. When the love of God is absent, it's often replaced with anger, disappointment and pain, tension, rejection, loneliness, hurt is experienced. As we all know, family tensions can actually explode during this season. And that's so foreign to God's intention in the birth of Christ. When you look in the Gospel of Luke in chapter 2, verses 9 through 14, that portion of Scripture records the heavenly birth announcement to the shepherds in the field. And in Luke chapter 2, verse 10, it says, the angel said to them, I bring you good news of great joy. The birth of Jesus, the Savior of the world, is intended to do something. It's intended to bring great joy. Why would it bring great joy? Well, God is with the people, and He's delivering them. And He's delivering them from slavery. And the slavery that they are slaves to is sin. God has come so that He might deliver us. And that's why the Lord Jesus Christ came. Paul on one occasion was speaking to Timothy through a letter in 1 Timothy chapter 1, verse 15. And he said this to him. He said, here is a trustworthy saying that deserves full acceptance. Christ Jesus came into the world to save sinners, of whom I am the worst. Christmas has a message of God's love. But it also carries with it in the love of God the message of forgiveness of sin. That is the heart of Christmas. And because God's love being manifested in the giving of His Son, so that man who is a sinner by nature might be rescued, because that's the heart of Christmas Satan has worked overtime to diminish that message. And so today we simply look at Christmas as a myth. It's a child story. And many have taken the heart out of the story of the birth of Christ. And as a result are simply empty. What is Christmas? Christmas is an open revelation of the love of God for us. Again in 1 John 4 9, that's what he said in this, the love of God was openly demonstrated toward us. How do you describe what cannot be described? How do you describe love? Well a simple fact about love to be understood, it needs to be demonstrated. And God's love was openly demonstrated. God's love was expressed visibly. God's love is demonstrated in the giving of His Son. In verse 10 he said in this, the love of God was manifested because that God sent His Son. Again, why did He send His Son? Well Matthew tells us in chapter 1 verse 21, as the angel of the Lord spoke to Joseph, he said concerning Mary that she will give birth to a Son.  The Bible says clearly that God sent His Son in order to provide salvation for man. Contrary to common belief today, the Bible makes it very clear that man in Scripture is revealed to be separated from God. We are separated by what is called sin.  You have God and you have man, but in that chasm you have the word sin. Sin makes a separation between God and man, and the Bible makes it very clear that man as a sinner is separated from God. Isaiah told us, behold, the hand of the Lord is not shortened that it cannot save, nor his ear heavy that it cannot hear, but your iniquities have separated you from your God. Your sins have hidden His face from you so that He will not hear. Sin makes separation. There is none good, no not one, the Bible makes very clear. I'll have sin and fall short of the glory of God. The wages of sin is death, and so the Bible is very clear that sin exists. It is a willful disobedience, a rejection of the things of God. It separates us from God, and the bottom line is, is because we're separated from God, we have no hope. The wages of sin is death. The Bible tells us it's appointed unto men to die once and after this judgment. There are no second and third chances. There's only this life that we have, one chance, one opportunity, and we need to make the best of that. Man has sin, God is holy, man deserves God's judgment, but God did something for us we couldn't do for ourselves. He gave us grace through Jesus Christ and a way out. Paul said in Romans chapter 5 verse 8, God demonstrated His love toward us, and that while we were yet sinners, Christ died for us. God so loved the world that He gave His only begotten Son, that whosoever believes in Him should not perish but have everlasting life. God sent not His Son into the world to condemn the world, but that the world through Him might be saved. And so there was a purpose in God's activity, and that was so that we might have a relationship with Him. That's why Jesus said if you hear what God has to say in that gospel message, you can have eternal life. And that's what John is saying. He's saying Jesus provided salvation for man. And what I love about this in 1 John 4-10, it makes it very clear that the one who initiated this love relationship isn't man, it's that God loved us first. 1 John 4-10 says, not that we loved God, but that He loved us. I don't know how many parents I have in here, I probably have a number of you who are parents and others who would like to be. You really don't want to be. And I share this quite often, or often enough over the years, because it's a lesson I learned as a young man when Marie, my wife, was pregnant with our firstborn, my daughter, Corinne. And when Marie told me that she was pregnant and as her body began to have telltale signs that she was pregnant and her little belly began to swell and all of that, I can still remember that I would get close to her little stomach there. It wasn't really little, but I'd get next to her stomach. I couldn't help but get next to her stomach, but and I would yell in it. I would grab her tummy and I would shake it. And I would say, baby, baby, this is your daddy speaking. And I would yell, this is a true story, and I would yell, I love you, I love you. And I would shake Marie so that Corinne would kick. And I did that quite often. And then the day comes. And off we go in July of 1977. And we go to the hospital. And Marie goes through 33 hours of labor. And she's going through this labor and I'm praying and saying, thank you, God, that I'm not a woman. And that baby's born.   And they wrapped her up. They brought this little burrito to me.  You may be ugly, but you're mine. And I remember just holding her and kissing her and loving her for the moment I held her. But even before I held her, I already was in love with her already. And the day comes when they grow up and they begin to form words. And before you know it, you start hearing words like daddy and mama. And you start hearing words like, I love you. And every father can understand, we so would hope that when you hear your baby say, I love you, it just touches your heart. And you look back at them and say, Oh, and I love you too. I love you so much. But the day comes when they say, I'm mad at you. I don't love you. They start listening to their mom. I don't love you. And then they'll say, you never loved me. You never loved me. The drama. You never loved me. And you look at her and say, I've always loved you. Right now, I don't like you. But I've always loved you. And by the way, long before you were ever able to say or form the words love, I love you long before that ever happened. Even before you parted the womb, you were already love.  And that came from the heart of your father. So when I tell God, I love you. It's simply because he first loved me. He first loved me. I can't ever raise my fist into the hand of God and say, you don't love me. He says, I don't love you. Look at what I've done for you. I demonstrated my love for you by giving my son for you. How can you say, I don't love you? And this was manifested the love of God. He sent his son Christmas. We have a God of love, a God who loves us so much he gave. He sent his son to be a propitiation. The word propitiation is a powerful word. It speaks of the satisfaction or the satisfying of somebody's anger. Jesus satisfied the righteous anger that God has because of sin and in order for that anger to be satisfied God sent his son and he offers forgiveness and life freely if we receive that gift. There are a lot of gifts under the trees. None of them give life. Only one gift does. That's Jesus, the gift of God. So we celebrate Christmas not just by having family and friends over, meals, exchanging gifts. We celebrate Christmas because God gave to us the greatest gift, eternal life through his son Jesus Christ.


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Have you noticed that? Is that a good thing? Don't you hate that? Well they used to tell us it was okay to eat butter and sugar and fat, and now it's not so good, but on the other hand if it's natural butter that might be okay, but oh no, not if it's, and then sugar is, no sugar is not, and then I, why do they make up their minds? Why do scientists keep changing their minds? Why do they do that? Because they're trying to be annoying? Why do they do that? Why would a scientist change his or her mind about something? And they lose new information, so that's a good thing. We would like that, we would like more information. Well what happens when a politician changes his or her mind? A lot of information. So we know that scientists are not going to make mistakes, but sometimes they can only say what they can say. They don't know enough. This is the best they can do at the time. The example here is Newtonian physics. At the time, what was the best idea semester you could do? It wasn't until Einstein came along and he said what if, and then here's an example of something where we can't do a scientific experiment, but it's a scientific result nonetheless. What we know about Einstein is that he loved stories. In fact, he spent more time on stories than he did on physical scientific experiments. He would begin to say let's suppose we were in a spaceship and it was traveling at the speed of light and we had an observer outside of the spaceship and an observer inside the spaceship and they each dropped a ball and they noticed the other and he would develop elaborate, wonderful stories.  Suppose there's a spaceship going at the speed and he could feed back and he improved the stories and he was drawing more about stories than he was about experiments and it was those stories that he called them thought experiments. They were more convincing for the scientists at the time. They were well known by usability to come up with a good story, much more convincing than the real physical experiments that didn't come until much later. We also know that scientists are biased. That most of the time scientists do some kind of research and they have investments in a particular point of view. And now along comes a new idea or a new theory and they will resist that as long as possible because after all their publication, their position, their tenure, if they're at a university depends upon all the work they've done up to this point. And so a very famous scientist named Max Planck said, science makes progress not because scientists pay attention to new data but because the old scientists die. We have to wait for the old guys to die before we can make any progress. You can see that now in economics. Classical economics, which is what I say, believed that you and I are rational decision makers. The models for them are just the rational decision maker. Is that a bad sign? It looks like it is. Should I be worried? I'm not worried. You might be worried. Oh, isn't he on the science level? Okay, so they're paying attention and we will have to worry about that. So what we know about scientists and who are behavioral economists is that they said, hey, let's do some experiments. We're not just going to have these nice models that are built on fuzzy ideas. Let's do some real experiments and what they showed is that people are not rational decision makers. So they have created a new field called behavioral economics. And I'll give you some recommendations for reading about that later. But the old economists are hanging on, especially at the University of Chicago. They are hanging on to their old models and we have to wait until they die. And then behavioral economists can take over.  So I can see what's going on here. You'll have the slides later, I guess. I have a great quote. I was on a committee that was reviewing papers submitted for a scientific conference and I got a comment from one reviewer who said, I wouldn't believe this, even if it were true. What we know is that it takes most. We know that good science can inform us, but what convinces us, what leads us to adopt the idea is a good story. This is the way it happened for Garfield. It wasn't the nice organized research by Semmelweis. The physicians in the U.S. didn't care about that. They didn't look at it. It didn't convince them. What influenced them to change their practice was the death of Garfield. A good story about what happened to the president when inappropriate practices were used. You can see that throughout the history of science. Has anyone heard of a guy named Galileo? It happened to him. When he came home and he said, no, no, we got it wrong. Everything doesn't revolve around the earth. No, the sun. That's what's happening is the earth is revolving around the sun and did the people at the time say, oh, Yimmy, thank you, Galileo, for sharing your insight. Is that what happened? Is that what happened? No, no, that's not what happened. Even his fellow astronomers said, are you kidding? What are you talking about? We have this nice model. It explains everything and it fits with the Bible. The earth is the most important thing in the universe. Forget about that other sun thing. And he was holed up before the Roman imposition and they were very convincing. It was sort of something like this, Galileo, change your rider.  He said, okay, I'll change my mind. Sure. And like Semmelweis, they locked out. This is how we start out. Experimenting. We would never want to walk if we weren't natural scientists. If we weren't always saying, oh, what are this does? And by standing saying, well, I think I can figure this out then. Oh my goodness, I fall down, but that's okay. I get up again and I try again and I fail again. We wouldn't be here. We wouldn't walk. We wouldn't speak. We wouldn't have any other wonderful skills we do if we hadn't had that approach of being a natural scientist, of performing a series of experiments, trial and error, learn from failure. If we hadn't had that approach to the way we live, we wouldn't make any progress at all. And what happened to us? What happened from that wonderful stage of our life to where we are now? Oh my goodness, do we do this now? I don't think so. The search became not so much about trying and being okay with failing. No, no. It was more about I need to get the right answer. I need to find the right answer. That's what our parents told us. That's what our educational system has trained us to do is here's a problem, find the right answer. And if you do find it, then I will give you an A. That's what our organizations do. Here's a task. If you do it, I will reward you and we've done that over and over and over. So even in science, it's not about doing science. In science classes, it's about here's a list of things that you have to memorize. Now you go out and memorize that and then I'll give you a test and you will either answer it or not. And I will grade it and I will say you get an A or a B or an F. So now that's what we're doing. Those are the kinds of questions I get when I go around the world. How can I do this over zombies? How can I do the right thing? I want to can you give me the answer? I am in the habit of saying I have no idea. Here are some things you could try. I cannot pull up a little nice package of things and say here it is. This is the answer. This will solve all your problems. In fact, if you're paying good money for consultants who come in and do that, I would say beware, beware, run away, run away, be very afraid. Because not only is there not always a right answer, sometimes there's no answer at all and we never prepare students or our children for that. So there might not. You might just have to do the best you can to proceed forward. I'm always looking for better ways so I can live longer.  Probably sooner than I realize. That's hard.  I don't have the answer for your problem. Here are some things you could try. Realize it. Not just trying to be contentious. I'm telling you the truth. The truth as I see it. So even when I talk about experiment, we know that many executives are afraid. They don't even like that word. If you go to your CEO and say, hey, we're going to try some small, cheap experiment, I'll bet he or she is not going to be happy. Because the implication of experiment is risk, possibility of failure, and what that executives thinks he or she is paying you to do is have the right answer and get it right. They're not paying you to say, well, I'm not sure. Linda said we can try this or we can try that. They don't think that's an enthusiastic way to proceed. So if you're going to try experiments in your organizations, which I recommend, you better find another word. In the retrospective sessions, we said, well, we can try just saying action items. We know language matters. So you need to find a way of doing those small, cheap experiments in your organizations without scaring your music is. So what can you do? I feel like I've been pretty discouraged at this point. Really, there are some points of light on the horizon. And one of them is some small efforts at research within the Agile community. They're not looking at big, enormous, though I minimize control experiments, but they're looking at the practices, the individual practices, or some small piece of Agile. So here are two recommendations. On the left is a book that was written by Lauren Williams. She is a professor at the University of North Carolina, and she has done a lot of double line control experiments with different kinds of people who are doing their programming. So I recommend her book. On the right is a paper. If you can't find it, send me some email and I will send it to you. Our little bell, she did experiments with her programming. We looked at who should pair with whom? How long should the pair duration be? He really did have hypothesis analysis. These were real science as he could do it in his environment. Now, when you read that, you should take it with the realization that this was his context. But it should give you some ideas, build on that, small research, and try your own experience. So this kind of thing now is happening a lot. People are doing real science with little pieces of Agile development. So do that. There are people outside our industry who are doing real science that applies, that directly applies to what we are doing. So on the left, this is a large study that was done by Theresa Ammibiles. She's a professor at Hardware Business. She wrote a book called Progress Principle. And in it, she describes a study of software development. She followed them for an extensive period of time and collected a lot of data on how they work and motivates them. And the title might give you a little clue, the short story is what motivates software developers is to make daily progress on something they care about. It seems startling. It seems common sense. But now there's the beginning of truth. But what in the middle is something that everybody seems to be reading when they must do a survey. How many are reading it? Or how many have fought about reading it? You've thought about reading a book about the key. The problem with this book is it is really, really big. And it's a slog of reading, but it is amazing. So I recommend it highly. And in it, you'll learn a lot about yourself. You make decisions. And it's all based on science. So it doesn't have to do a software development, but after all we do thinking for a living, wouldn't you like to know better ways? And then on the right is just one of Dan Erling's book. I recommend anything by Dan Erling. If you just Google on Dan Erling, you'll pull up TED talks and articles and lots of free stuff. He's also written three books. So the books are about his research and it all applies directly to software because he's a behavioral economist. He's one of the new young guys who's coming in who's going to change forever in the field of economics. So there are just three examples. There are many more of people who are outside our industry, but their research, their scientific research has direct application. We can use that. We can pay back what they're doing even if we can't do the science. I know you're going to think this is crazy. I think one of the most powerful things we can do in order to be better is to get together and talk about it while you're eating a believer in the power of food and to back me up. I have this wonderful quote from a Nobel laureate at Cambridge and he said, it used to be at Cambridge that we all had lunch together. And when we were together, we would talk about ideas for experiments, ideas for making things better. And he said, what happens now? Well, everybody eats alone, after their deaths, doing their email. He closes, you can't learn anything by doing email. So we're hiding behind a lot of tools that we think help us. And some of those tools are getting in the way of the most insightful app we have in our environment, which is the other people that we work with and just having human interaction and talking about ideas for small cheap experiments in better ways. Don't lose that. Hide behind tools and apps and other electronic things when you've got wonderful brains. Sit around the table with some food. Make sure that your teams are as diverse as possible. Here's another paper from Harvard. I want to send it to you. It shows that having one woman on the team or somebody from another culture or somebody who believes differently, somebody who maybe doesn't like agile. That's a good thing. We talk about firing people who say, I don't care programming. No, no, keep them around. I can have a role for them in my pattern language heroes change. You need somebody who doesn't like all along with the herd. You need the point of view of somebody who says, I'm not sure this agile stuff is really all that great. That's a valuable person and you should listen. You should pay attention. You should just say, well, it's my job and I have to convince them. I have to influence that person so they'll be just like the rest of us and we'll all march together. We love to march together. We love to march together. We want to sing together. That's what the military does. We think that's a good goal. We are all, we are all going agile. The agile has done that has changed everything. So here's what it's all about.  How big are those steps? Well, they used to be 30 days, but now they're, they're shrinking. They're two weeks a week. Talk to a team last couple weeks ago. How big are those steps? Well, they're smaller and smaller and what happens in those steps is we do a little experiment. We try something and then we deliver it and then the customer says, that looks okay, but maybe this part up here, I'm going to show you that. And we're back in the scientific experimental mode of trying something just as we did when we were babies. Let's try that little step and maybe we'll fall down, but we will start over again and we'll get better. And we will learn even, well, there is no such thing as a failed experiment. Every experiment tells you something that's going to be useful. So we're back in the role of being a natural scientist regarding development as a series of experiments and maybe for some of us, even doing that in our own lives. Who should be agile? It's not your project, your team, or your organization. All of those components are made up of individuals. You should be agile. That's the goal. Adam had brought values, human values to the table and said, hey, remember software is developed by people. We need to be better. And the way to do that is little tiny steps, learning every step. So the conclusion of the talk is you need both. You need real science to validate whatever it is that you're doing, but people are not convinced by data. They're influenced and they begin to believe because they hear a good story. So you need the power of both. But I would be happy to see more science in what we do every day. So I encourage you to try to find ways of doing a little tiny experiments. Now I wrote a paper about this. It was published in my trip to software back in March, April. And again, if you can't find it or through some of my website, send me some email and I'll be happy to send it to you. I don't know if you have time for questions. Do we? We'll do a couple of questions, but I so appreciate your time and attention. You've been absolutely wonderful. So let me take this opportunity to say


Okay. Well, it's a pleasure to have Kathy Hudson here. I introduced the topic briefly with a slide in my director's report, but we specifically wanted to have Kathy come and talk to council. I know council would be interested in this topic, but also it really is an interesting chapter. I didn't even know what the title of her talk was going to be, but it really is an interesting story to be told, how this played out. I will tell you, Kathy put in countless hours, if not days and days of effort navigating a very complicated circumstance. I and several of us from NHGRI in particular, Laura Rodriguez and Mark Geyer and a couple others were quite involved on a regular basis on phone calls with Kathy as she used us as partners, but as advisors and helped navigate what was a much more complicated course for her than it was for us. But I saw enough of the front line of the story to just see how challenging it was, and Kathy was just masterful at it in many ways. I also think that the perspective that she co-authored with Francis, although I'm sure she did most the writing, was fantastic in the end and if you haven't read that, you really should. But I'm going to let her just tell this story, but I really thought it would be special. The timing couldn't be any better for a council presentation directly from Kathy on this interesting story. So, Kathy. Thanks, Eric, for the invitation and it's nice to be here with you all with some friendly, familiar faces around the table in the back of the room. Thanks very much. So, this has been an interesting story to be a part of over the last several months. I'll start with, uh-oh. Just a question anywhere on your feet. So, I will start with a little bit of background, which I'm sure you're all very familiar with about Henrietta Lacks. She was born in 1920 at the young age of 31. She was being treated at Hopkins for an aggressive form of cervical cancer. Researchers took cells from her and ended up being able to successfully start a cell line, the first human cell line as it turns out. The family, of course, has been dealing with the situation ever since they learned that their mother's cells had been used in this way. So, how her identity became known and how the family's identity became known I think is relevant here. So, in 1951, George Guy at Hopkins was able to get the Heal a Cell line to grow in culture. In 1971, there was a commentary, actually an obituary published in Obstetrics and Gynecology that identified Henrietta Lacks and included a photograph of her. The obituary was of George Guy. And it was written by Howard Jones, who was otherwise known to many of you as the father of IVF. In 1976, Victor McCusick, the father of human medical genetics, published a paper describing the Lacks pedigree and specifically was looking at HLA typing because at the time it had become well known that many later derived cell lines were contaminated with Heala. And so if you get any cell line near Heala, Heala takes over. And so Victor McCusick and his team contacted family members and had them come back to Johns Hopkins to provide blood samples. If you've read the book The Immortal Life of Henrietta Lacks, you get a perspective of how there was a lack of clarity on the families, from the family's perspective in terms of what exactly they were being asked to provide and why. So there was a perception that they were being tested to find out whether or not they might have the same disease that their mother died of. In 1997 there was a documentary and then probably most importantly for the general public's understanding of this situation and identification of who the family is and who Henrietta Lacks was, was the publication in 2010 of The Immortal Life of Henrietta Lacks. So how many people in the room have read The Immortal Life of Henrietta Lacks? It seems like you can't even get on an airplane nowadays without seeing somebody reading The Immortal Life of Henrietta Lacks. So it's very, very, very widely known. So if you do a Google search today for Heala, you'll generate two and a half million results. There have been 74,000 scientific publications using Heala cells and mentioning that. In the last ten years most of the Nobel Prizes have used Heala cells as a part of their work and even our youngest scientists of course are using Heala cells. And here are two examples from the Intel Science Search and from the Siemens Competition. So I don't think that many of us, all of us read the book, but I don't think many of us gave much thought to what we were doing in our laboratories and the connection to the family until March of this year when researchers in Germany posted the first whole genome Heala sequence in EBI and of course it was mirrored in NCBI. Fairly quickly the Twitter world lit up. Rebecca was aware that the sequence had been published. Rebecca Sklut, the author of the book, was aware that the sequence was posted. She contacted the family and the family requested that the sequence be taken down. And in fact the authors agreed to have the sequence taken down and it was taken down quite rapidly both from EBI and NCBI. As we started to look into the situation we learned that there was another publication pending with nature that was funded by NHGRI. Of course the German publication was not supported by NIH. So there was a editorial that was published in the New York Times by Rebecca Sklut. And in the process of generating that op-ed, Rebecca reached out to her. And I knew her from my days at Johns Hopkins at the Genetics and Public Policy Center because she was a stringer for the Washington Post. And she wrote a very flattering article about the Genetics and Public Policy Center soon after we launched. And we had remained in contact ever since. So she talked to Francis Collins and myself and ended up including a quote from Francis in her editorial. And during our conversations we asked if she would connect us with the family. And she said she would think about that and talk to the family about it. And that was very important for what's the rest of the story. So in thinking about how to address the problem of what to do with the sequence that had been taken down and what to do with the sequence that was pending at nature. We gave a lot of serious consideration to how to make sure that we generated a solution that was the right size for the problem. So not to create a solution that was ginormous and sort of supersized, but not also to create a solution that was too modest for the importance of the situation. So in generating the solution to this problem, there were a lot of people who played really, really important roles. Notably Eric, Mark Geyer, Brad, Laura, and Larry Thompson from the Genome Institute, as well as a slew of people from NCBI who were instrumental in working with us and folks in the Office of the Director. And this was also a topic of conversation among the NIH leadership on a number of occasions with the Institute directors from across the NIH. So we had an opportunity with the help from folks at Johns Hopkins to meet with the family over a series of months. And that was a fascinating experience. This is Francis taking a selfie. I had never heard of a selfie. That's how under a rock I live of on the day that we announced our agreement with the Lax family at Johns Hopkins and standing directly next to Francis' Jerry Lax, her brother David Lax, and their mother standing there together. There were many other members of the Lax family who were present when we announced our agreement. So on, I can't remember the date and I don't have my glasses so I can't say it. So we managed to reach an agreement which I will talk to you a little bit about and also talk to you about how I think this agreement is something that's going to be evolving and your input and thoughts would be really welcome. We did manage to reach an agreement and Jay Chinduri's paper was published with the second full human genome sequence, a commentary by Francis and I. And at the same time, the German sequence was reposted but this time in dbGaP. So both the Chinduri sequence and the German sequence were made available at the time of this publication. So over the course of our time with the Lax family, and let me just say a couple words about the Lax family. So the Lax family is multi-generational and it was multi-generations that were participating in these discussions. They attended these meetings with me and Francis and a couple of folks from Hopkins over a period of months. Where we began with trying to just understand what the circumstance was. And then over time working towards what would be the options for how we move forward. And then what were the respective pros and cons, good, bad, and ugly of each of those options. There were anywhere between nine and 12 family members at any given meeting. And during the intervening times between our meetings, they had discussions with their broader family. And at the end of the day, they had a consensus position, which I think is a remarkable thing. I can't reach a consensus agreement with my nuclear family about where to go to dinner.  So elements of the agreement. So we opted to put the two whole assembled genomes into controlled access in D.B. Gap and require that researchers apply for access in order to get to that. And the terms for access that a researcher must agree to in order to get access is that they will use the sequence for biomedical research only. That they won't attempt to contact the family. That they disclose whether they have plans for intellectual property or to develop a commercial product or service. And that they include a commitment to include an acknowledgement in publications and presentations. And in fact, I should note that Jason Dury's paper includes such an acknowledgement and sort of the model of the first application of that policy. So the policy also requires that future whole genome data be deposited into D.B. Gap and we already have another submission that is in process. So that would be the third HeLa sequence that will be in D.B. Gap. In order, so the way that D.B. Gap works for GWAS data and this was a real learning experience for me and hat tip to Laura Rodriguez for walking me very slowly through this because it was new D.B. Gap sort of emerged after I left NIH the last time. So ordinarily there's a data access committee that looks over requests for access to data sets and determines whether or not the researcher's proposal meets those criteria that were laid out in the original consent. In this case, there is no consent. So what we are relying on are these conditions that were set forth by the family. And it's important that this is a very unique circumstance and a point that we've tried to make over and over again about how this is not a precedent for anything. This is an agreement that we've reached with the family to address a particular unique circumstance in science and ethics. So our working group is going to operate much like a data access committee. But current NIH data access committees are made up of NIH employees. It became apparent to us that it would be advantageous to include members from the family in the review process. And so that meant it couldn't be a DAC in the old fashioned ways. And there are legal issues in mixing feds and non-fed. So we ended up creating a working group of the advisory committee to the director, which is the highest advisory group to Francis. And we have had advisory groups on a slew of important issues over the years. We currently have a working group to the NIH director working on developing the scientific plan for the Brain Initiative. We have now the Hila Data Access Working Group. And they will review each of these requests as they come in. The requests are submitted through a DB GAP study page. So there is a parent page about Hila. And then there are now two, soon to be three sub pages. And on this page are special instructions for researchers that really lay out the requirements that we want them to address in their data access request. And then also information about the Data Access Working Group and also the mechanism of how to submit another Hila genome if you have one. So the Hila Data Access Working Group was put together on the day that we announced all these things that we announced. It is chaired by Renee Jenkins, who is an adolescent medicine doc at Howard University, also included our folks who you certainly know, Russ Altman. Ruth Faden from Johns Hopkins, who was involved in the discussions with the family. And so she has a preexisting relationship with the family that I think will be really helpful. David Lacks, the grandson who you saw in the picture with Francis. Veronica Spencer, who is a great granddaughter from another son of Henrietta's. And Clyde Yancey, who is a member of our advisory council. I'll just skip that, we got lots of press. So where are we now? We have since August 19th received, actually that says four. We now have over the weekend a new one. We have five requests for access to Hila data. The working group is meeting for its inaugural meeting on September 12th this week. They will be reviewing those five data access requests. And we are optimistic that they will be operating by consensus so that they can as a group send forward consensus recommendations to recommend to the advisory committee to the director that access be granted or not, or they can also request that there be more information solicited from the investigator. There are a couple, so one thing that has been really important, particularly to Francis, but I think it's important to all of us, that this controlled access work effectively and efficiently. So we wanna be able to not have this stand in the way of research moving forward. And of course, as researchers, we would like to not have anything slow us down by more than about three nanoseconds. So we're trying to have this process move as quickly as possible. It is a new process, so this first round through, we were sort of getting our sea legs underneath us. But we, if all works according to plan, when we move these data access requests forward later this week and on to the advisory committee, which meets on September 16th, they will take action on them. We will have finished the entire review process in under a month. Hopefully, we'll be able to even shorten that over time. So one of the things that I think would be interesting to get your input on overtime or any thoughts that you have is what kind of data, HeLa data needs to go into DBGAP. We were, of course, responding to these assembled, two assembled genomes that we knew about and now more. And so when we were thinking about what data goes in, we basically took everything that was associated with the whole assembled genome from both of the groups, okay? So everything that they had, we slurped it into DBGAP. We were very candid with the family all along and we learned lots of interesting things about how much HeLa sequence actually exists out there in public databases today and when the first sequences were around and it's just a massive amount of data. And so we were very clear with the family that it would be impractical and, frankly, impossible to take all that data that was already out there and put it into controlled access because it has been downloaded and published and recycled so many times that we really couldn't do it. So at this moment in time, the data that's in DBGAP for HeLa is the whole assembled genomes and sort of related sequence files. The question moving forward is, do we expand the policy to ask that researchers generating any HeLa sequence data also submitted to DBGAP? And that's an issue that Francis has asked the working group to take up. I think they probably won't take it up robustly at this first meeting because they've got to sort of work through these initial applications for access. But I'd be interested in thoughts that any of you have either now or send me an email or give me a call. It's going to be an issue that we're going to have to struggle with and get some resolution for the research community in the near term. I think that's all I wanted to say. Yes, it is all I wanted to say. So I'd be happy to answer questions or respond to comments or whatever. Okay, thank you, Kathy. I'm sure there'll be discussion. So council members or others, Amy, start with you. Thanks, Kathy. That was very helpful. So in coming up with, obviously this was a unique case and there's a lot of unique sort of circumstances surrounding the case. But in coming up with this policy solution for this case, did you guys have broader discussions about policy around the rights of relatives of individuals who were generating sequence data on and either prior to their death after they die and how we're going to handle that and how we're going to create policy that's more scalable than this solution? Or do you see this as just unique? I really do see it as just unique. So we had the conversations probably 15 years ago about consent from family members and what role do family members play? And I think that my own position is that if an individual opts to participate in genetics research or to learn about their genome outside of a research setting, that that decision should not be overriding by family members.  But I don't think that this circumstance, there were some erroneous representations of what we were doing here is suggesting that family members can sort of dictate what happens to sort of pro bands genetic information and that really is not the case. We have, this situation has certainly fed into the department's considerations about its revisions to the common rule more broadly, but the issue of what are the regulatory and legal requirements for family members is really not something that we're taking up as a policy initiative at the present time. Carlos. So I want to thank you also for the presentation. I think it's fascinating and it's great to see the right thing get done. Sort of following up on Amy's question, not so much focused on family members but focused on cell lines. So there are a large number of cell lines out there that are sort of in this other region where they were produced well before say thousand genomes consents and other consents that explicitly say, look, these are going to be broadly disseminated and dot, dot, dot. So I'm thinking things that are in Corielle or other cell lines that are out there, some of which we ourselves have sequenced. What are the thoughts there in terms of policy? Is it a sort of case by case or is there sort of thinking of grandfathering some of these in, have you had those discussions and if not, is there a plan to have that? So that's a great question. So one of the unique features of Hila is how widely known who she is and who her family is. And so we have tried to look into whether or not there are other similar situations, other similar cell lines. And then from our review, there is probably one that is not on the same scale, but where the donor's identity is known, where the cells are widely used, and where the donor has known or knowable progeny. So that's sort of a special case. And then there's all the cells and specimens that are out there that have been procured for research either with consent being waived or used in a de-identified way. And I think that the department's seriously thinking about how do we handle those that we already have versus how do we handle ones that we will acquire in the future given that DNA analysis now makes samples so readily identifiable. So it's something that we're thinking about. Kathy, can we back up a little bit and talk about the data that exists for the Hila cells in, I think it was about 160 gigabases. And then thinking forward, there's a number of large projects that are ongoing today that are using Hila cells. And what the criteria might be for deciding what would go into DBGAP, or what's the working group thinking? I know you're not a mind reader, but there are a lot of considerations about ongoing projects. How would they be distinguished from, for example, all the kinds of data that are already in NCBI? That's a great question. And it's one that we really are just starting to ruminate about. And this council is in a very interesting position to be able to even just raise what are the considerations here that the working group should know about. We did look at what data is out there already, but we haven't done a systematic look at what are the current funded or ongoing research projects where Hila data is sort of embedded in those initiatives in a thorough way. So this is really something where we're just starting to think through the ramifications of all of this. Maybe I missed it, but what is being done to help the Lax family interpret the available genome in terms of health or medical relevance? So a couple of things. One is that in our early discussions, and Jerry Lax says that she felt like she was in genetics 101, we were in a conference room at Johns Hopkins and there was a whiteboard and, lo and behold, Francis was up drawing pictures. So I think a lot of our time with them was providing some of the basics about, well, what is a genome anyway? And what can it tell you about you? And what does it mean if it's not your genome, but your parents' genome or your grandparents or your great grandparents' genome? And then as a part of that conversation, we made the family aware of ongoing research studies in which they could obtain their own genomic information rather than trying to divine probabilities from their great-grandmother or grandmother. So we shared with them that they could participate in some of these research studies where they would affirmatively consent and learn this information potentially about themselves. We also made available to them a genetic counselor and a medical geneticist who were provided with data in a 60-page printout from somebody, and I actually don't know who it was, who pushed the sequence when it was up on the EBI site, pushed that sequence through SNPEDA and had a variant readout. And so our medical geneticist and genetic counselor walked through that data with the family or some members of the family who were interested. So that's sort of what we have provided. We've offered that they can meet with those folks again. We've offered that they can participate in protocols like ClinSeq. And then I think that in an ongoing way, especially the members of the working group, the family members on the working group, are going to continue to be in a... Well, let me back up. Everybody in the working group is going to be in a learning mode here because this is sort of uncharted territory. David Lax sent me an email after I sent him some materials about the working group and about what the first meeting was going to be. And he is actively engaged in understanding the nuances and sort of exploring this. So I think we're enjoying that exploration process, but we are trying to provide what we can. It's, you know, they got dumped into unfamiliar territory here. So... Karen? I was just going to ask you a question about in the list of the considerations when they're reviewing the applications, was plans for commercial disclosure of commercial plans? Could you tell us a little bit more about that? I think that's really interesting and where that's coming from. Yeah, so I think the family historically has had the issue of is somebody getting rich and we're not has been a theme for some members of the family forever. And it certainly came up in the context of our discussions. We, interestingly between the second meeting we had the family and the third meeting we had with the family, we got the Supreme Court decision about the patentability of non-manipulated genomic sequences. And that actually helped us a lot, right? So in trying to think through, so the family asks us questions like, can you imagine what would be immediately sort of a first order commercializable thing from the HeLa sequence? And, you know, we thought long and hard about what that would be. And we were, we came up with a few ideas and then we disproved our own ideas. So we didn't come up with anything that was sort of obvious, but we also aren't all knowing. And so we didn't want to say absolutely nothing will come out of this that will be commercializable and you'll read about it in the Wall Street Journal. And one of the things that we have been extremely sensitive to is that this family keeps on getting surprised, right? Whoops, another surprise. So we cannot legally tell somebody who's trying to access sequence that they have to vary their intellectual property or give up their intellectual property or whatever, but they can, we can ask them to disclose it. And so if they disclose it and it's known, then if the family seeks to reach out to them and have a conversation, that's outside of our sphere. And just knowing about it was really important to them. So we also have a requirement that if when you submit your application or your data access request and you say, no, I don't have any immediate plans, if those plans change, they're required to update it. Okay, but the implications of this are this might be grounds for no access. No, no, no, okay. Because it is interesting in the common rule, I mean, in the informed consent documents right now, it's often disclosing you have no commercial interest, this could be commercially developed. So we've sort of set that as a standard in contextually anyway. That's right, okay, yeah. Is the demarcation for the biomedical research only that that means not ancestry research, or is there something else? Just that. Could it be something else I haven't really thought about. But yes, so there have been categories that have been used in DbGaP in the past and we sort of presented those to the family and ancestry was out. But there are other based on informed consents. There are lots of data sets in DbGaP that have much narrower data access criteria. So only breast cancer, only this or that. So this is actually incredibly broad. And the working group, of course, can modify what make recommendations for modifications to this policy over time if it turns out that that's needed. But... Kathy, I know you don't want to try and set precedent with this, but I'm just wondering, looking at those criteria, as we've been talking to human genetics researchers a little bit about using DbGaP, I can, thinking about some of those conversations, I can hear them saying, I would like to be able to exercise that provision on my DbGaP data. I'd like to be able to tell my study population that any commercial plans would be disclosed, to me at least. Is there any possibility or thought about... I mean, obviously DbGaP has its own rules about use, but you could almost imagine a menu, a checklist of a couple of things like this that maybe investigators could sort of put on their own DbGaP databases. Is that something that's been talked about at all? Not directly, but there are cohorts out there that have restrictions on who can access data. So, I'm looking at Terry. Isn't it true that Framingham now has some ability of cohort participants to say that the data can't be accessed by private sector? Yeah. Yeah, yeah. So there are things, it's not so much you can't commercialize it, but if you are a commercializer, you can't get it. So... Any other questions, comments? So as Kathy offered, I'm sure they're interested to hear any other thoughts you have. Send her an email, or I'm sure she's going to the phone and talk to you. This is still a work in progress, but... Okay, thank you, Kathy, for visiting with us. And we're staying right on time. This is great. Right. And we're doing well. So next up is Terry Manlioz, going to give a report from the Genomic Medicine Working Group.


Welcome back to Investor Intel. I'm Peter Clausi. Today we're revisiting an old friend, Dev Rendawa from Fish and 3.0. Hi Dev. How are you doing, Peter? Good. I'm missing you in person at the mining show, so this will have to do. Well, that will bring the wine separately. That sounds good. Fish and 3.0 is up in the Athabasca Basin, the world-famous Athabasca Basin. A prolific source of high-grade uranium produces what? 20% of the world's uranium? Yeah, it varies depending on which mines are open, but you're getting up there 25 to a third. So you've been up there since 2003. The first reference I can find to you with the public company is Predator Exploration in May of 2003. Well, yeah, we did have some properties, but really, yeah, it was until we had that big moving uranium remember in 96-98 for a short time, and right back down, or Benton, bankruptcy pushed it up, and there was no activity until 2003-2004, and it was actually Strathmore was focused on the uranium, and we started with Quebec and then finally got smart and went to Athabasca. So that makes you one of the world's foremost leaders on exploration for uranium. Well, we've made two discoveries, and I say we, I really want to, that's Ross and Ray, and the team they put together, they've made two great discoveries. And to remind our viewers, that was Fish and 1.0? Yeah, well actually Strathmore was our first, and it split into two. The U.S. assets eventually got sold to Energy Fuels, and we took the Canadian assets through a plan of arrangement called Fission Energy, and then Fission Energy, you made a discovery with Butterfly again, Fission Uranium, and Fission 3.0. So it's been, so if you held a share of Strathmore, you'd have four shares in your account today, all active uranium companies. So Fish and Uranium is your second largest shareholder with 11 million shares. Right. I think you're the third largest shareholder holding about 8 million direct and indirect. Right. Out of 160 million, and Luster Sparks through a holding fund has 17 million. That's right. I brought them in. And the management team does have a significant number of shares as a group, so your interests are aligned with the rest of the team. Yeah, we have never sold a share, like I, you know, I own some of these shares in 1996. Wow, it's a long time. So I'm either not very bright or very loyal. So what's the plan for 2021-2022? Well, it's subject to what prices are doing, how much money you raise, how active you are, and how many partners come to the table. So that's subject to that. I believe that, you know, the Flow Through Funds will raise some money this fall, hopefully, and get ready for a robust winter exploration program. We will certainly look at PLN and, you know, projects we already have 14-15 million spent on it. We've got smoke. As my geologists always say, whether smoke there's fire, but sometimes it takes several holes before you can know exactly, you know, where it is. Right.  Almost all of them. You know, the, again, how we always are looking for projects that where we identify our targets being very shallow, it's cheap to explore, cheaper to drill, you know, 1-200 meters versus 4-800 meters. Right. And also when you go to mine it, it's going to impact your mining cost. So in that respect, always. But, you know, it's very hard to find some time. So that's why this technology, this Airborne Technology Group of Calgary has, we've been using for years. We're always consistently looking for, you know, near other mines. And we're also looking for boulders on top or an outcrop. Right. And that's the best indicator in the world, right, is more uranium. So that's what we're doing. And all our targets reflect that. Takes money to explore. How much do you have in the bank? Well, about 1.7, but our overhead's minimal. I think we've got like, you know, overhead, like actually about 10 grand a month and salaries. I don't take one. I take all my end in stock. If we have no cash, then I do that. We have some, we take some. But generally we, all the, as you say, the management's aligned, you know, we want more shares.  But the biggest bank for investors is discovery. Yeah, stock will go from 10 cents to $1, $2. A mine being developed will never go from 10 cents to $1, not a chance. So, you know, Lucas Lundin, you know, this was one of the reasons we split Strathmore into two. He says, he said to me, he says, you know, isn't developing a mine boring? And I said, he says, or developing, and he goes, no way, exploration is the only way to go. And that's where his dad is, you know, did well. So exploration is the best way to make the biggest bang for the buck. So here, big finish, Dev. Why uranium? Why not cobalt? Why aren't we talking about scandium? Why is uranium your mineral of choice? Well, simply because it's a deficit every year. We use 50 more million pounds than we ever mine. And I think we're serious about green energy. And I certainly get the feeling that Biden is for it.  And I think it's when it moves going to be very volatile. And so that's why if you think that, and there's only one energy Bill Gates will tell you only one energy, you know, it's carbon free, no footprint whatsoever, yet, baseload power. It's the only energy out there that won't add to our CO2. And we can go home at night and everybody can crank on their oven at the same time. That's a good finish. Dev, thank you for your time. We'll be touching down on you again. Fish in 3.0. Dev is accessible. If you're bored, give them a call. We'll talk to you all day. Thanks for your time, Dev. I'm Peter Claus, exciting author and investor Intel. Thank you guys.


Hi, thank you for joining me. I just arrived on the train we just saw depart here at Shepardswell today. Reason I've come here is because as the sign says it says a light here for the East Kent Railway and that's exactly what I've done. So we've arrived at what appears to be a really nice attractive little country station. The East Kent Railway is over there behind those trees. It's quite an interesting railway because it's one of the Colonel Stephen's light railways. He was a gentleman who built various light railways around the country. Some were standard gauge, some were narrow gauge. So probably his most famous is the Kent and East Sussex which obviously is quite a well-known heritage line but the East Kent was another one of his built. Quite a late one built. Built as late as 1912 and was open until 1986 because it served the colliery and then when it closed it became heritage. So what we're going to do is we're going to go up over the bridge and round out the front of the station to find East Kent Light Railway. Got a nice old lattice footbridge here. The station is fully accessible because there is another entrance just down there. There's the long tunnel we've just come through. So that's looking towards Dover that way and I'll just show you from here while we're on the bridge. Looking north is towards Fabersham. You can just see the summit. So if a steam train came through here it'd be working quite hard until it got to that summit and then the steam locomotive would be able to shut off and roll down the hill through Canterbury towards Fabersham. It's a really attractive little station. I like this station on Air Bintree before, passed through a couple of times. You can see the signal box up there as well. So we've got to find our way out. I think the exit is over here. Make a nice house this station. I wouldn't mind living here. So I'll let you have one last look at the main line. You just see the signal box and the wind is blowing all the leaves off the trees. So as we come out here and believe you, yeah, there's a south east and a foot sign up, which is very good. It says East Kent Light Railway. So there's no question of what way to go, which way to go. There's the front of the railway station. So let's go and ride East Kent Light Railway. Never, ever been here before. So as I record this video I am seeing it all for the first time. Interesting here we have a few narrow gauge wagons. Must be a nod to the line's collieries, which it served. I believe there used to be a big good shed here. From looking at an old picture somewhere around here, there had been a good shed for when, you know, there used to be the pickup goods. So here we have some narrow gauge coal wagons. That's interesting. It looks like a pump truck, but it's got a, I've never seen one quite like that before.  Oh, it's javelin. And there's the signal box. I can't actually see. It's very faint, but it still says shepherd's well in Network South East Colors. So, railway station down there. So I think that's where we're going to go to get the standard gauge train, but let's just have a, what's this? Oh look, East Kent Miniature Railway. Doesn't look like it's running today, but there is a Miniature Railway. I can see standard gauge train down there at the station. Let's just have a little walk around here first and then we'll go down there. So that Miniature Railway, it looks like it just goes up there. So it's quite a short one. I think they have got a longer Miniature Railway here, which I'm hoping I'll have a ride on, but we'll see. So there's actually a triangle of lines here. So some track that went that way to join the main line. The East Kent Railway itself goes off in that direction. So let's just see what we find down here and then we'll go and have a look. We'll go and have a ride on the train. We've got a steam locomotive, a little industrial steam locomotive. We've got an OH Schunter, a couple of other diesel locomotives. I already quite like this place. Model railway, I'm going to have to go and have a look at that. Just let you see the steam engine. Just to up here and then I'll better go and find out when the train is running by my ticket and we can go for a ride to be up over there. So here, quite an interesting array of equipment we've got here. Oh look, Woodland Miniature Railway. I'm just going to have a ride on that as well. So here we go. Richborough Castle. Now the East Kent like railway did once go as far as Richborough. There was a power station which was demolished a few years ago. Here we have another little local. This one's called Snowdown, which is the name of the station further up the railway. I'm going to go now by my ticket and we're going to go for a ride. The train has arrived. Quite an interesting mix of rolling stock and locos. We had former Southern region EMU carriage on the front, then there's a Mark II brake coach. That's a rather interesting looking diesel locomotive. I've never had one of these before. I think they're XMOD but I'm not 100% sure. My knowledge more covers the BR locos. There's so many industrial locos. I just don't know too much about them. Interestingly, there's a pacer up there, fairly newly arrived. I never ever thought I'd see a pacer this far south. There's Snowdown again, a locomotive we saw a moment ago from the other side. What are we going to do? We're going to walk up. It's quite interesting on there's Richbrook Castle again. We're sort of in the apex of the two lines here. There's another 08 Junter. We'll have a look at what's the other side of the locomotive and carriages when we get round there. I'm just going to take you round this way first. We're going to have our ride and then what I'm going to do after we've had a ride we'll go on the miniature railway. I'm going to put that in a separate miniature railway Britain video so that won't be in this video. There's another X Army diesel locomotive and here's another locos like the one we're going to travel behind. I think the model rail is in that carriage there so we'll go in there see what we can find. Here's an 08 Junter. There's that steam locomotive, industrial steam locomotive again. It's quite an interesting mix of different locos and rolling stock. I don't think it's the sort of place where you're going to see sort of big former BR steam or diesel locomotives but we're going to see lots of interesting stuff. So what I'm going to do now, I'm going to go to the model railway see what we have to see there. I'm just going to put my mask on so I can stop filming for a second. I'm going in there now. Put on a bit later. There we go. Hello. What I'll do, I'll do some static shots which I'll put in but let's just have a walk through. That's a really impressive layout. There's another carriage which goes through to here and they've got an engaged layout. So there's an engaged layout. Like I said, I will put some other, I've got a G-scale layout but I'm going to put some other shots in this program. And then there's one more layout so I'm going to get some shots and I'll put them into the video now. I've just enjoyed seeing the model railways off double over gauge, engage and G-scale. That way we'll take us back to the main station but of course we've come here to have a ride on the standard gauge. He's kept railway so he's fine. There's two of the trains. That's exactly where we're going to go. I'm going down this nice leafy road which will take us down to the railway station where we're going to catch our train. So where we've saw it come in that was from the picnic area the other side of the station. So you can just see our train is waiting for us there which we'll take down here first and couple things on to show you. We've got a little packet steam loco. We will see the front in a moment but it's this that I really like. It's a Fumper. It's actually 205-001 so the first one they built and I do remember these in service. So for me it's nostalgic to see one. I never traveled on one in service but I do remember them. Interesting view of a Fumper 08 and I can just see a Pacer in the background and of course the packet in the foreground. So as we come out here get a better view here near the packet there's another 08 Shunter and over there is our train. So I've got to go to take it off this apartment to have a ride on the 19th. I just boarded the train I'm in my first class compartment so it's just me so I've been told I don't need to wear face covering. It's pretty nice this first class so I'm enjoying it looking forward to enjoying the ride for what's going to be a four mile round trip up to I-form. I've been told we can't get out I-form for COVID reasons which is fair enough. I'm happy enough to be riding on the train. Just have a look out there. So us to see the train arrive and see all the diesel locos out there so when we're now going to go for a ride up the line to I-form. In fact there's some interesting railway vehicles which I'm going to show you as we go past. If you have a to extend the railway up to Tillmanstone College soon going to travel back to Shepardswell. As we depart the station there's a couple of things there's some very interesting bits of rolling stock in that bay platform so I'll show those to you as we go past and I enjoy the ride back down through the tunnel to Shepardswell and when we get to Shepardswell I'll do the second part of this video which will be a separate video we're going to go and have a ride on the Minutes Railway. So we're just now waiting to depart I-form station the driver will go to the other end and the diesel loco is going to propel us back as we saw when we saw the train arrive at Shepardswell and if you're wondering why there's two of me that's because there is a giant mirror in this carriage so we've just got to wait now for the journey back to Shepardswell. So here we are at I-form this is the current end of the line we're just about to depart and head back to Shepardswell the track does continue beyond I-form station for about half a mile or so there is a talk of extending it to Tillman Stone Colliery where the line ran till until 1986 whether that will happen or not I don't know so I'll show you a couple of things here we have a rather interesting looking electric locomotive I remember when this was at the Coventry Railway Centre also known as the airfield line or the Electric Rail Museum and so was this vehicle this is prototype diesel electric multiple unit carriage so they were bought here when that was closed what we're going to do now is we're just going to enjoy the journey back down through the tunnel to Shepardswell and when we get to Shepardswell I'm going to record another video a trip on the Minutes Railway so do watch out the Minutes Railway video will be coming soon I've really enjoyed my trip though on the East Kent Light Railway so thank you very much for watching do come and visit them and please do feel free to like subscribe comment thank you very much for watching goodbye


Okay, so let's try this one now. It's, again, the relative size of particle question, but this time we're talking about the ion relative to its parent atom. So in this case we've got cation from its parent atom, and here we've got an anion being formed from its parent atom. So remember what we just discussed. When you've got a nuclear charge that's greater than your electronic charge, of course the nucleus is going to have a higher, a stronger effect on the electron cloud than it would if the charges were equal. So in other words, right, we've lost some electrons, so the nucleus has a much stronger pull on the remaining electron. So in that case what you'll find is that the particle size of the cation is significantly smaller, especially when you go to the 2 plus, go to 3 plus is really good smaller, significantly smaller than its parent atom. So which one of these is, I can't remember the question, larger or smaller? Let's just do smaller. Okay, so which one of these is smaller? It would be the beryllium 2 plus cation. And again the opposite argument is not true for anions, right? So charge, so it's more diffuse because the nucleus doesn't have as much an effect on, as much pull, so it actually gets more diffuse, so the parent atom is going to be smaller. This is a general trend that you'll see.