Childhood Cancer Talk Radio promotes awareness of this very real and prevalent disease by providing a forum for conversation and advocacy in a growing community of affected families.
Disclaimer: This transcription is not the production of TogiNet Radio, Beck Multimedia or Jack's Angels Foundation but was provided by The Cure Starts Now. The original podcast can be found here.
Janet Demeter:
Welcome to Childhood Cancer Talk Radio where kids come first for the cure. I'm Janet Demeter your host, and out of the gate, this year, 2021, despite the COVID-19 pandemic, is ripe for hopeful future for childhood cancer. With the resolve of passing the Creating Hope Act for another four years of funding, just by the end of the very trying year of 2020, we look forward to success for the Kids First Data Resource Center at NIH with the Gabriella Miller Kids First Research Act 2.0 with a possible reintroduction this week. This is the last week of January. What are we, two weeks in now to a new administration? To think they would even get this one on the floor, that's amazing. But I'm keeping my eyes peeled because I got a notification that it might happen.
This crucial research program, in particular at NIH for pediatric disease is helping to prioritize pediatric research and also is affecting new innovations in collaboration, in research, and also for funding, urgently needed. Despite years of hard work among childhood cancer advocates to really move the experiential needle for children who are diagnosed with cancer. In some areas, we're so very close to having more effective therapies, but outcomes have not changed significantly yet. And I say yet because we're really, really close, and this is demonstrated most powerfully in the space of pediatric brain cancer research.
If it weren't for my guest today and the organizations he built and helped build over the last 12 years, I cannot say with confidence that we would be so close. Most do not realize that childhood brain cancer leads in childhood cancer incidents and deaths. For the second most common brain tumor in children, DIPG or Diffuse Intrinsic Pontine Glioma, the worst of the worst. The one which is responsible for more brain tumor deaths in children than any other. The same standard treatment protocol and terminal prognosis exists today as in 1962 when Neil Armstrong's daughter tragically died of the disease. It's still a death sentence, and knowledge of this tumor cannot help but inspire activity and resolve for a cure. The deaths are as horrific as they are tragic.
In 2021, parents should not still be told that to the medical research investment culture in place, there children's lives just aren't numerous enough to matter. In order to explain the lack of solutions and the fact that there is no where on Earth you can take your child to save them from DIPG.
When Keith and Brooke Desserich found out that their beautiful daughter, Elena, had DIPG, there were no dedicated trials, no networks, no information, and no parent groups. Elena's story was the first public case of DIPG. Ultimately becoming the subject of a bestselling book titled, "Notes Left Behind" that was published in 22 languages and forming the basis for what is now around 16 million in funded DIPG research with millions more now spent annually.
After Elena's death in 2007, they created The Cure Starts Now foundation, the largest DIPG and DMG research charity with 40 locations in the United States, Australia, and Canada. They also founded the DIPG Collaborative, coordinating the efforts of another 25 independent DIPG centric charities. They created a major symposium with six conferences held, drawing together over 400 experts at each meeting, and they also helped develop the International DIPG / DMG Registry, the SIOPE DIPG Registry, the Connect Consortium, and the informational web resource of DIPG.org and medulloblastoma.org. Medulloblastoma leads in childhood brain cancer incidence. It's the most common brain tumor in children.
When I usually come on this show and say that 95% of the research funding for pediatric brain cancer's funded by parents and parent led foundations, I would feel comfortable guessing that a significant portion of that comes directly from The Cure Starts Now network of organizations in some major way.
Keith and Brooke have two other children in addition to running The Cure Starts Now, and they're established entrepreneurs with history of creating or owning several other businesses. And now I am honored to introduce you to Keith Desserich to the show.
Welcome Keith. I'm so glad you're here with me today.
Keith Desserich:
Thank you. Normally the biggest title I always end up getting is just I'm Brooke's husband and Elena's father. That's about as far as anybody ever knows me, and I'm happy with it. That's the best way.
Janet Demeter:
I'm so glad you're here with us. Thank you, Keith, for agreeing to come on and tell us about what's happening with The Cure Starts Now in 2021. How things have changed? I mean, my gosh, you were really at the forefront of the beginning of so much activity. I'll just let our listeners know that in 2012, after my son had died, actually we just moved into 2013 I think was when I first found The Cure Starts Now and I called you. It was like, "Oh my gosh, I can't believe this is here." Because when my son was diagnosed in 2011, it was still the attitude was like, "Well, it's so rare. It's like you've been hit by lightning twice. That's why there's nothing. That's why he's going to die, and there's nothing you can do." I really see that we are getting very close. We're like on the cusp of finding actual therapies that are going to change outcomes for these kids.
Keith Desserich:
Absolutely are. That's the thing is that people will ask, "Why do you do this? Why in the world do you ever want to go ahead and focus on research? And do you think a cure will ever be found?" The answer is absolutely we think a cure can be found. Why would we do this otherwise? Because you don't enter into something and say it's impossible and I can't accomplish it. We can accomplish it, and you're exactly right. I mean, things have changed. Unfortunately, a lot of things also stay the same too.
When you go back and you look at it, when our daughter was diagnosed, we were told that she would only live 135 days. That was kind of where we started, and that's what "Notes Left Behind" was about us going, we have 135 days to pass on everything we know about our oldest to our youngest who's only three at the time. So we started writing these things down, and this was before blogs, this was before Facebook, this was before Twitter, which seems like decades ago, but really it was only 13 years ago.
We started writing this, and it got bigger. I didn't even know what a blog was, and people found it. I was just using it because I didn't know and I wasn't calling my family. So it just kind of grew and grew and grew, and ultimately we've lost Elena. But what ended up happening is there was a cause that was built, and my wife and I looked at each other and went, "All right. Let's see if we can find somebody that has already done it." And we went out and looked, and there was nothing. I think that's what leads to really that impetus to really want to change things, to want to do something, to want to actually cure this.
We noticed a couple of things. Number one, that medicine and medical science and research fundamentally wasn't structured right, and we noticed also that there was really no crusader for these kids. Everybody just regarded them as kind of a lost causes. By the way, that's happened before. You go back to leukemia and you go back to the early '30s, '40s, and they regarded those kids as lost causes. They would say, "We should kind of keep them in a basement so nobody can really see them and the plight and ignore them and just make them comfortable." A person was strong enough to stand up and say, "No, these are actually the future of cancer research. We need to focus on this, and with it, we're going to find a cure for them all." That person was named Dr. Sidney Farber. What he did was he revolutionized everything you know about cancer and gave us another way to fight it, a fourth way to fight it or a third way to fight it, depending upon where you look at it. That's where we're at right now.
You talk about Armstrong. You talk about how this has been around for a long time, but this is our very first steps. This is where we're actually going to conquer cancer, and we call that the Homerun Cure.
Janet Demeter:
I love it. I love it. I remember when I first discovered you guys, I couldn't believe it. It was like a dream come true after having felt so alone, and I often tell my friends if I hadn't already, when I contacted you, if I hadn't already started a thing for my own 501(c)(3), I absolutely would've been a chapter. I still kind of regret not having been able to come under that banner. I've just watched all of these chapters that have grown up and not only advances that you've funded or helped fund, but also just innovations in how we do research and how we're qualifying and categorizing these tumors as well. You guys have been integral to that whole process it seems.
Keith Desserich:
Well, I think what we are is we're very good at asking questions, and I think that's what we really wanted to focus on is taking a new focus on it. The problem with it is that we tend to look at things and say, "I'm going to guess that this is going to cure this cancer." We make assumptions, and our researchers are making assumptions based upon limited funds, based upon limited timeframe, and they're trying to be able to cure it on that. That's really where it starts. You have to be able to walk into you, and you have to be able to get information, like some of the sources that you talked about. The Gabriella Miller Act and everything else. It's a wealth of information that's really going to move this needle.
Janet Demeter:
Absolutely. I did want to ask you a little bit about Elena and just what the experience was like back then, and also, what year was The Cure Starts Now founded? Was it immediately after she died?
Keith Desserich:
It was actually brought up by the community. Our Cincinnati area here went ahead and created the charity even before. We weren't part of it in the very beginning of it, and it just kind of took further and further.
Janet Demeter:
Could you tell us a little bit more about how the Homerun Cure is evolving and these new ways and different concepts in funding are coming into play?
Keith Desserich:
Well just taking Homerun Cure for the very beginning of this, the charity was actually built by others. We kind of joined a little bit later on it, but it was built on a very simple journal entry at that time. Remember, at that point, DIPG was basically a two sentence section of a giant 1200 page manual on oncology. It was nothing. But the two sentences were something to the extent of that many researchers believe that if we can find a cure for this, we might be able to change the way we fight other cancers. And that seemed like the most important group of sentences I had ever seen in those books. So that really struck me at the beginning, and I reached out to several doctors and said, "Does anybody really believe this?" And what I found out was that they all did. They all felt that DIPG forced them to try new things. It forced them to not simply rely upon treatments that didn't work in this category, and it forced them not to tweak their way to treatments but effectively create a cure.
I called that the Homerun Cure, and that night, instead of writing about Elena, I sat down and I wrote about this idea that maybe we were curing cancer wrong. I ended that journal with the words, "The cure starts now." That's where it came from. That's where the name came from. People started writing checks to The Cure Starts Now. My wife called me up and said, "Who is The Cure Starts Now? What did you do now?" I believe was her words. I said, "I don't know." I didn't even know where it was coming from. I had to go back and read it. I went, "Oh, okay. I guess it came from the last words."
We didn't want to build this. We really didn't want to create an empire or a charity, and I think that's kind of where you have to start. If you want to do this and this is something you want to do, even in Elena's name or something like that, that's noble, but we just felt that it needed to take an identity of its own because clearly it already had. Today, we're the only homerun cancer charity really out there and that's scary because what it means is that we are fighting cancer according to the numbers. We throw the most amount of dollars at those cancers that most people get the most number of diagnoses. That makes you feel good, but at the end of the day, it doesn't improve the science. How we're going to beat cancer isn't by throwing money at the ones that it effects the most. We're going to cure cancer by throwing money at those that we believe we can learn the most from.
DIPG, pediatric brain tumors, medulloblastoma really have a unique opportunity to really change the face of every cancer that's out there, and we've seen that. We talk about this histone mutations that were discovered. Well, that came from one of the trials that we funded, and what that was is the idea that some of these levels were actually present not only in DIPG but maybe they're in other cancers. And we're starting to see some of that. We're already seeing the beginning of kind of that homerun strategy.
I guess that's Cure Starts Now. We have three things that we focus on. Number one is the homerun strategy. Number two is we focus on don't do things that other people do better. So if another charity or another foundation's already doing one of those areas, we'll focus on something else because it really takes a partnership. We have to work together. We don't want to build that empire. And the last thing that we do is fund research entirely different ways and to really take a business type of model opposed to just doing it the same way that we were and just throwing money at it.
Janet Demeter:
Well, tell us about that. I want to hear more about the business model and how it's evolved over time.
Keith Desserich:
Well, we looked at it and said we tend to look at things, and this just came from our medical advisory council. They said, "You need to look at grants and say let's focus on those grants that can only be done in a year. Let's focus on those grants that you can only do for 100,000." That was it. That was mainly taken for kind of an NIH model to it. The problem with it is that it really doesn't allow you to stretch out your ideas.
There's also weakness that a lot of charities, and frankly, we're leading the research. We're responsible even more sometimes than the researchers for these mistakes. But we tend to fund things in what I consider kind of three buckets. One of which is what I call identity funding, and that's where you want to fund something that affected your child or a doctor that treated your child or even at a local institution where you're based. That feels good, and that's nice to see it. It really brings cause to your child's name, and it helps that. At the end of the day, it may not be necessarily as effective of a way to be able to find a cure though because what maybe close to home may not be what is the best research out there.
The second thing that I think we as family foundations are doing wrong here is we tend to do also one-off funding. We look at things and say, "That's a neat idea." We fund the translational research or the test tube mouse model element of it. Then we just kind of let it go. We never really looked to the future and say, "Well, if this works, what are we going to do? If this doesn't work, what are we going to do?" We just simply say, "We're going to fund one and we're done." Think of it as if you're running a relay race, and all you're doing is you're setting up your first runner and they have a baton and it goes absolutely nowhere. It doesn't matter whether you ran that first leg. It matters whether you finished the race. So we looked at that also and said, "We don't want to do that. We don't want to make that same mistake."
The last and final way that I see that people are funding out there is what we call bounty funding. That's where you go out there and you say, "I'm going to put up a bounty of a million, a hundred, $200,000, if people can get together and maybe find out an answer to this." That's kind of like both of the previous two. In a lot of cases, there is no generational plan setup on it and it typically is focused on whatever's the best of the best. It doesn't really find good research, and sometimes even funds bad research. That was kind of your breakthrough saying, "We just really got to focus on it in different ways and really not try to make those same mistakes."
Janet Demeter:
Well, yeah. And especially because the trends now necessarily so is to more collaboration between entities and the de-siloing of things because we have more limited data pools in multiple places we have to share. I like the explanation you gave, the analogy of passing the baton because really that's what research is. I mean, honestly, science moving forward.
Keith Desserich:
You go to these meetings, and you have a really great project that's presented that's translational. They're just doing it on a chemical level, and they're presenting this idea. And everybody goes, "Oh, wow. That's wonderful idea." But they're depending upon a clinician to actually pick it up and turn it into something else. Typically, they're not at the same institution. They're not already talking to each other. So we're really depending upon the chance that somebody's in the room. They didn't go to the bathroom. They weren't up grabbing lunch at the time, and they weren't engaged in the email they were reading. And they were paying attention. Not to mention the fact that they even bothered to attend the session in the first place.
Then they have to go get the funding by the way afterwards. Well, typically of your grants, one out of 16 grant opportunities actually get funded. So your chances are already low to begin with. Now you throw all those other variables in it, and I'd be surprised if we are actually taking one out of every 100 good ideas and taking them anywhere. You just can't do that and try to be able to cure cancer. That's wasting money.
That's why when we do it, we look at it and we say, "All right. Let's do it generationally." If we're going to fund research, we want to know if this works, let's not only kind of say, "All right. What are we going to do next?" But let's then also set up the next researcher. I want to find that clinician that is interested in the translational research even before that translational research has started. That's kind of what the symposium became. We went out and actually tried to put them two together. Granted, it never really went to the clinical mode if it wasn't successful. But even if it wasn't successful, well let's dive deeper and figure out why it wasn't successful because we don't want to make the same mistakes twice. Did we go and look at some of the biopsy information? Did we look at it and say, "Okay. Did we have the wrong assumption? Do we maybe want to tweak it? Are we doing any kind of reconciliation of our ideas to be able to advance it?"
It's a business model. When we go into it, we tend to look at it and say, "We want to focus on letting a business model dictate this. We want to base it upon information. We really want to advance it." I think that's something we can talk about as well is the whole idea of this data model. What you talked about at the beginning of the show with the Gabriella Miller Act, Kids First Act, the DIPG Registry, that really has the biggest chance of really changing the way we fight cancer in general.
Janet Demeter:
Absolutely. The way we do research and prioritizing the pediatric research because it gives so much. Whereas the converse isn't true all the time when we can't always translate a therapy for something going on in adults for a correlative in children. It doesn't always work so well, but pediatric research is just literal gold mine of information and innovation and things that really stretches our science because these are areas that just haven't been touched.
Keith Desserich:
Oh, exactly. I mean, pediatric brain cancer is one of the most aggressive forms of cancer. It's resistant to chemotherapy. It's difficult to remove. It forces us to fight with new technology and new thinking, and if you look historically, it's where we've made every advance almost in cancer has come from these types of realms.
Janet Demeter:
That's amazing.
Keith Desserich:
Why are we doing anything else?
Janet Demeter:
Right. Well, I'm so glad you agree. When we come back, we're going to talk a little bit more about those programs and pediatric brain cancer and the importance of awareness.
We're back with Childhood Cancer Talk Radio where kids come first for the cure. I'm Janet Demeter, your host, and it's halftime. You know what that means. It's time for your advocacy report. Today we're having a moving advocacy report all this entire show because I'm fortunate here to be talking with Keith Desserich. He's CEO of The Cure Starts Now Foundation, one of the world's really greatest charities for funding pediatric brain cancer research and for innovation in the space and growth in the space. It's all proceeded by awareness and outreach. As Keith was telling us in the top of the show, there was nothing when his daughter was diagnosed in 2007 or maybe she was diagnosed before that. I don't know how long... How long did Elena last for you? How long did you have with her?
Keith Desserich:
256 days.
Janet Demeter:
Okay. So twice as long as they gave. Wow.
Keith Desserich:
Twice as long. It shows us that we didn't know anything too, but the good news is that the survival time's now, we're getting close to about 20 months now.
Janet Demeter:
If you can get on one of those trials, right?
Keith Desserich:
It really is key on parents getting information too. We talk about not only information about research, we need to have information for parents.
Janet Demeter:
Absolutely. That is key. I just wanted to dovetail back onto the Gabriella Miller Kids First Research Act was first signed into law by President Obama in 2014, and it established this database of pediatric disease genetic information, a network that they've built and NIH funded at NIH, and this year they're putting another bill through to source another area of funding for it. Wouldn't come from taxpayers actually. It would come from a pharmaceutical penalty fund that isn't being used for anything else. So that would just go back to the treasury. It's not being taken away from anyone or repurposed of anything. It's just sitting there. It's actually quite a bit of funding. I think it's funny that pharmaceutical companies would rather gain penalties than invest sometimes than invest in our kids. It's like a very poetic kind of justice that their penalty money will be funding this amazing project. We're hoping if the bill gets through.
In 2014, Gabriella was one of our biggest childhood cancer advocates, and she just happened to capture the attention of the House Speaker at the time, Eric Cantor and ended up being the face for this bill that they had not being going anywhere in the House for a long time because of this movement that really the CureFest began in 2013 I guess was their first more official one. The movement for childhood cancer awareness began a long time, but it just really accelerated at that time. A lot of these advocates pushing for awareness have been... I just myself found DIPG to be just a great ambassador for childhood cancer because it's so horrific. It's been in the dark for so long.
Keith Desserich:
It's also small enough that we don't have an ability to not cooperate. If we're going to advance this, we actually have to. That's where it really is truly the leader I think cancer needs because in other forms, you don't have to work together. In this, we don't get statistical relevance on any type of study unless we work together. That's kind of been the mantra with it. You got, for example, what Gabriella Miller, her family did is to really kind of pave the way for that to be indoctrinated into our government, to have that support, to build that foundation for it. Just absolutely wonderful things. You have organizations like PNOC, PBTC that are now starting to use that and starting to use that foundation.
I think there's still a role particularly for the DIPG community to play though in terms of making sure that we are capturing the right data. I think sometimes we may not be capturing the right data. We tend to capture data just for the sake of capturing data, and we think it's a really good idea. But it's almost important for us to look and see are we collecting link data? Are we collecting kind of one-off data that comes from research? That way we can use it for the future.
What the difference is that when somebody goes and the research does a trial, they collect information. Let's say they're only collecting... They're doing a study that's primarily based upon gender and incidence. If that's the case, they're only going to collect data on gender and incidence. They're not going to collect necessarily biopsies. They're not necessarily going to collect family histories, none of that. Another researcher goes out and does a study that maybe focused on let's say gender and location. But they're only going to collect data on those two things. Each one of these is limited studies. Well, we take that. We throw it in the same database and say, "We have data all on these patients." The problem is these patients don't intersect. They're totally separate groups of patients taken probably at different times.
The conclusions we make between them while sometimes are right, are also sometimes wrong. What a link database is where you're organically collecting information, where you go into it and say, "Let's put together a list of every question we ever wanted to know about this cancer diagnosis. Family history, genetics, tissue, you name it." And this is what started with the international registry, DIPG Registry. And we came up with I believe it's 640 or 630 questions. Now one of those questions is the entire genetic mapping of DIPG. That's a big one. The other one is a family genetic history. So you're talking out of 630, it's more like hundreds of thousands of data points. But if you can collect that on every single patient that gets through that, imagine the massive information, and you can make conclusions on that that will not only just kind of give you guts checks as to what is the drug that you want to try. It'll actually identify mutations. And really dig it down to a low, low level. That's what I think we have to get ourselves to.
We have a system now with these data initiatives that have really changed the way we do things. The only thing we really got to do is we got to focus on the ground game. We got to focus on collecting the information organically with it. And if we can do that, man, PNOC, PBTC, even CONNECT are great vehicles to really take this and to turn them into active trials.
That brings me to the other part that you were talking about. You talk about pharmaceutical participation. When all of a sudden you have data and you have data that identifies the mutations, the pharmaceutical companies come to you. They want to invest in pediatric brain cancer, and that's what we're finding with this consortium that we built called CONNECT. We built it on the back of the International DIPG Registry, which between that and science, 1400 DIPG patients, the biggest of anything out there. When all of a sudden you have that data and you can find the mutations, we have just to give you an idea of Connect. We threw in I think it's $2.7 million to start it. Well, today principally pharmaceutical cooperation has thrown in almost another $8 million. We're getting that. It's just a matter of we got to build the system first because they're not going to have the vision or necessarily the patients to kind of go through that route.
Janet Demeter:
Now I know that depending on circumstances of death, which is never nice to think about, but some kids if they have their tumors preserved are in... They don't have cell lines growing, and I'm just wondering with the DIPG Registry, does it really matter? Can you still submit data that's helpful, even if it's in a wax base? Can you still access the genetic material?
Keith Desserich:
Absolutely. There’re capture rates for that. It's also shared between 114 hospitals.
Janet Demeter:
Because I want to do that. I really want to do that with my son's tumor. We weren't able to. We had strange circumstances around his death with communication issues and stuff with the hospital. It was always really tragic to me. I really want his little tumor to help.
Keith Desserich:
It does. It does. Those help more than you can imagine because, by the way, that can be signed up by parents. You don't have to be a doctor to do it. So a parent can simply go to DIPGregistry.org. They can sign up for it right then and there. Sometimes we do get parents that are signing up for their children that have already passed. We still collect that information. Whatever we can collect, we try to fulfill all of the 600 and some odd questions we have to try to get that. And this is run by the researchers, the principal investigator on this is Dr. Maryam Fouladi. She was the one that took the vision, the leap of faith and said, "All right. I'll give this a shot. I think we can do it." We threw our funding in. I think the thing's cost... I think we put in about $4 or $5 million at this point. But, we have lots of those. If you can collect that and you can start to identify mutations, I mean, you are going to get participation. We're going to get cooperation, but it really starts with that data.
The other thing that we haven't talked about is also parents. You talk about the information, but I don't know about your situation. But I know in mine, there was nothing out there. So even us as parents had nothing to rely upon at that point.
Janet Demeter:
I love that Swifty Foundation that really helps educate parents so that when they will have to prepare. I mean, it's a horrible thing to have to think about, but in this area of cancer, it's really important because still with DIPG, really most all of them die. It's very few that get to grow up all the way, and it's a reality. It's so helpful. It can save kids in the future. We're going to take one last break, and when we come back, let's just devote this last period of...You guys do so much for the parents, and there's a new group that you all have put together called the DIPG Warriors. I'm hopeful that we can talk about that as well.
Also, I wanted to skip back and let our listeners know a little bit backstory about watching PNOC become this amazing organization that's still very early in its growth, but so much of it is because of your support.
We were also talking about the way things were. One of the things we really want to cover in this last segment is to let you know about all the resources that this amazing organization provides parents with, and that is the key. Where do you go? What do you do? There's all sorts of resources that The Cure Starts Now and its affiliates help parents find what they need, but Keith, oh my gosh, when I was in the hospital with Jack in 2011, everyone came around with one of these giant binders for childhood cancer people. I didn't need any of it. None of it helped me. Giant binder, no help. Totally lost. What the heck is this for? Oh, your kid's just going to die. There's nothing you can do.
Keith Desserich:
The binder was designed to give us information, but it was intimidating. I have my binder sitting on my bookshelf in my office here. I don't think I've read cover-to-cover, but that's the way it was. Back then when you had a trial, you had to read it. You would hopefully print if you could find a computer to do so. And then you would get on the phone and you would call and see if the trial was open. Now that was if a trial was even there. Today, there's lots of trials there. Matter of fact, if you go online, if you look it up, you even find clinical trials, maybe 40 or 50 of them. You can find probably over 100 trials out there for even DIPG alone. But you got to know how to look. And what we wanted to do, knowing about this binder, is we wanted to create a way that parents don't have to do that work and it doesn't make it intimidating.
We went ahead and created two websites for two types of categories right now. Hopefully two more. But DIPG.org and medulloblastoma.org. Very easy to remember. But these websites not only give you information that comes from experts. We've actually went out and found the best experts in oncology and had them write the chapters for us. It's kind of lie a book online. We also put a trial finder. So you can go there. You give your email address. It's all just going to families. Australian trials, European trials, North American trials and Canadian trials. It just comes to your box. Anytime a trial changes, and they do. They open and they close. This happens. You will actually get the information, sometimes even sooner than the doctors. We have a lot of doctors that actually subscribe to this list, and that's how they educate their families. Well, more importantly, we want you to have the information first. So just DIPG.org and medulloblastoma.org.
I'd also probably should also represent too with DIPG.org, if you know the book that American Childhood Cancer Organization put out. They went ahead and offered that content as well to be posted there in an online format. So, all of that, basically everything we know about these diseases are all right there.
Janet Demeter:
It's amazing you were saying just due to developments and some more hopeful and helpful clinical trials of the last few years that the kids are living longer. I said, "Yes, if you can get on that trial." If you can get on that trial because the standard treatment for a lot of these tumors, especially DIPG, is still radiation and palliative care. This resource is so helpful, Keith. It literally can make the difference between having some extra time with their child.
Keith Desserich:
You'll know about it before anybody else. Right now doing a search today, it's a little different today, but there are 65 clinical trials across 16 countries. It's already categorized for it. By the way, we don't filter them. It's all there. When you click on it, you can actually go into the links and find out. You may be the first one to know of this trial before anybody else. A lot of people go into their doctors. They print out the sheet, walk in or just show them on their phone, and the doctor goes, "Oh. I didn't know that that trial was even open. Yeah, that would be a great one."
That's the whole thing. We're trying to put the power of information in the parent's hands. That's really kind of what that is. The same thing goes with what you referenced about the DIPG Warrior program.
Janet Demeter:
Tell me about that because I know it's special for families that are in the fight right now, right?
Keith Desserich:
It is. It was something that actually came from the families. They said, "The Cure Starts Now, you guys do a really good job about research. But we would like to kind of unify together as just families and warrior families," that's kind of what they termed themselves. Ultimately, we looked at it and said, "All right. Is anybody doing this?" No, nobody was doing it. Okay. I guess it needs to be done. We have to kind of reconcile that because once again, we're not about empire building.
At the end of the day, it was a really great idea. It turned into a program that today when a DIPG or Medulloblastoma family is diagnosed, they can get a package of free shirts that they then can sell to try to do fundraising for cancer research. They get arm bands because everybody's got those jelly arm bands. Tons of them. They get that too with their child's name and their child's name on the shirt and all that. And then it goes towards research. That's what the program benefits. Now beyond that though, they also really wanted to talk to each other, and they wanted to talk just to each other. They didn't want to have their comments broadcast. They wanted to have a closed group where they're just talking to other families that are in the fight. We held back on that for a while because, frankly, I'm not sure we're terribly great at groups like that. I'm not sure that's necessarily our specialty in that regard. But they kept pushing, and it came from, ironically, our 100 Family Strong event. They kept pushing again on this and wanted to do it. We just started that as well to allow families to talk honestly to themselves, no filters, no moderation. Just don't beat up on each other, that's it. We want them to actually choose what subjects and what they want to talk about in the privacy of that group. It's been a really good thing on Facebook. It's under DIPG Support Group For Families.
Janet Demeter:
When you empower families like that, you bring hope. Just from that gesture in and of itself, and the only reason why we've had so much forward progress with awareness for pediatric brain cancer because most people don't know how prevalent it is. They don't realize how deadly it is. They don't realize how much suffering and death goes on over and over and over again when we could be doing more, but the way our medical research investment culture is structured, we need more wake up calls. But if it weren't for Cure Starts Now families, I have called on so many families in supporting our National DIPG Awareness Resolution.
Keith Desserich:
We've got 40 locations now I think. Hopefully it can help.
Janet Demeter:
Now yes, they are truly the rock stars at the state level on getting their states to honor DIPG Awareness Day. I'm telling you they've also been amazing in supporting our national resolution, which has been hard for us to raise awareness for even in our own community because we got the little bill that could. It really kind of acts as an ambassador for childhood cancer. With the horrific example of DIPG demonstrates how neglected this space is really and how we've just really allowed these deaths to become somehow acceptable because of their smaller numbers of our patient population. But again, it raises awareness for the prevalence and the deaths and also it asks that pediatric and high mortality rate cancers be given greater consideration in the research grant process, especially with our government funds. It's really an attempt to not only educate the public and Congress, but to really push home that point that we need to say yes more to things that increase pediatric cancer research funding and research collaboration capability.
Keith Desserich:
It's going to come from parents, and you're exactly right. People know what they want to do. They just don't know how to do it or what's the vehicle to do it. That's been one of the things that we notice is they come to us. I mean, the chapters kind of come to us and say, "We want to do this. We want to take it in this direction to it." And I'll power for it. We just don't want to make the same mistakes. The only thing we know is what we've done that hasn't worked. Beyond that, our chapters make up their own kind of future and how they want to focus on it. And that's beautiful. We love that.
Same thing also with for example, like the DIPG Collaborative. That's a group of 25 foundations other than Cure Starts Now who have their own guidelines, thought processes, directions. We exert no control over that. But when you put everything together, you have 26 foundations coming together to fund research in a collaborative manner so that we don't duplicate each other, and you have 40 chapters that are already doing that as well. That's 70-some odd families in DIPG, and that's really just unheard of. It works for advocacy. It works for the awareness it builds. It works just for funding research as a whole.
Janet Demeter:
I can always look up and find a chapter in this state and call on someone. They're like, "Yes," because they're hopeful because of the vision that you maintain with your organizations of we've got this. We're going to get this. Why not? This is why we're doing it. And a Homerun Cure has been so instrumental to that.
Keith Desserich:
And we talk about that, but we also talk about, for example, that 100 Family Strong. The whole idea of the Warrior program.
100 Family Strong is an event every single year. We find 100 families that want to help fund research and focus a day just on their child. This year alone we went ahead and did it, started 100 days away from the end of the year. We had 207 families that participated, and that's a lot. It's really good research fundraising. That's one of the things that people who are listening to this can help us with too is help us to talk about these kids, help us to put their word out because all of that helps research. They can simply go to Cure Starts Now and go to 100 Family Strong, and you can see them. You get to see all the faces of the families that are really pushing to make this successful.
Janet Demeter:
TheCureStartsNow.org. You can find links to pretty much any of this stuff. But also, remember, DIPG.org and medulloblastoma.org. Keith, I cannot think you enough for coming on today. You're one of my heroes in the community, and it's just an honor to be able to chat with you.
Keith Desserich:
I appreciate it. Between the two of us, I'd say, unfortunately, we pre-date most of the folks out there right now.
Janet Demeter:
I hope you come back again. I can't thank you enough. God bless you and good luck this year.
