An Innovative Approach to Funding Rare Disease Research - Heather and Ryan Fullmer, Co-founders of the EB Research Partnership
Heather Fullmer will never forget seeing her nursing license for the first time and realizing the date of issuance was the same as her son Michael’s birthday. She had spent the week since delivering him in the NICU as Michael’s struggle with the rare, life-limiting skin disorder Epidermolysis Bullosa began. “It was a surreal moment. I became a nurse professionally, and in my personal life on the exact same day,” she tells host Shiv Gaglani. EB is a pernicious disease which causes skin to tear at the slightest touch, with resulting wounds that don't heal. “If I had to sum up Michael's day,” says her husband, Ryan Fullmer, “it's probably fear and pain. We still haven't been desensitized to his screams, or the disappointment on his face from not being able to enjoy the day-to-day things that he sees his friends do.” In this inspiring episode of Raise the Line, you’ll learn how the Fullmers rose above their all-consuming struggles to care for Michael to forge a new approach to rare disease research with the support of Pearl Jam singer Eddie Vedder and his wife, Jill. The resulting EB Research Partnership raises millions of dollars a year to fuel promising efforts to find a cure for EB and, ultimately, other rare diseases. Tune in to learn how the “venture philanthropy” model they use differs from typical investing, and hear about important fundraising events for EB including Venture Into Cures hosted by Spiderman actor Tom Holland. And be sure to stay tuned to hear their advice to medical providers on the importance of building rapport with patient families, and taking an interdisciplinary approach to treating rare disorders. Mentioned in this episode: https://www.ebresearch.org/founders.html https://www.ebresearch.org/our-mission.html https://www.ebresearch.org/venture-into-cures.html Mikey's World video:
SHIV GAGLANI: Hi, I'm Shiv Gaglani. Imagine having skin that can tear at the slightest touch, with resulting wounds that don't heal. That's the reality confronting people who suffer from Epidermolysis Bullosa, or EB, a rare and life-threatening genetic skin disorder. We're joined today by parents of a child with EB who are working every day to care for their son and to advance the prospects of a cure for EB and other rare diseases.
Heather Fullmer is a wound care and ostomy RN consultant. She received a Bachelor of Science in Nursing from San Jose State University and has extended wound care education from Emory University. Ryan Fullmer has a twenty-year career in senior finance operations and management positions in the private and public sectors as the owner of FEK Advisors, a business advisory and accounting firm. The Fullmers are co-founders of the EB Research Partnership, and their child is Mikey. I'd like to thank Eli Lebovitsfor making the introduction to the Fullmers in the first place. Thank you, Heather, and Ryan, for taking the time to be with us today.
HEATHER FULLMER: Thanks for having us.
RYAN FULLMER: Thank you.
GAGLANI: I've obviously shared with our audience a bit of your background, and we spoke a little bit before the podcast, so I know a lot about you. But for their sake, maybe we can start, Heather, with you. Give us some career highlights, what got you into nursing, etc., before we go into the meat of this discussion, which will be about EB and rare diseases.
HEATHER FULLMER: Sure, absolutely. I just want to say thank you, again, to you, to Osmosis, and to Elsevier for giving us this opportunity to advocate for our rare community like this on such a grand scale, and to help professionals or future clinicians. Prior to having our son with EB, I had just finished up nursing school, and I had completed a preceptorship in the NICU. That's the unit that I really wanted to build my career in. I liked the complexity of the cases, the challenge they provided, and the advocacy component in the unit. That's the unit that drew me. Upon graduating, I took the NCLEX, which is a test that you take to become a registered nurse. I was probably around eight or nine months pregnant at that point, and then about a month after that is when I had our son, Michael. It was about a week after him being in the NICU that I had come home -- just really quickly taking a break from the NICU to take a shower and eat something. I had looked through the mail, and I saw I had gotten something from the Board of Registered Nursing. I opened it up. It was my license, and it was just such, I guess, a surreal moment. [Heather pauses]
GAGLANI: No worries, I can tell how poignant that was, getting that right around the time of your son's birth.
HEATHER FULLMER: Yes. So I opened up the envelope and the issue date on my license was actually my son's birthday.
GAGLANI: Wow. It was like a sign almost, right?
HEATHER FULLMER: Yes. I became a nurse professionally, and in my personal life on the exact same day.
HEATHER FULLMER: As you can probably imagine, I kind of switched and redirected from going to the NICU to focusing my career on wound care after that. I've been able to fall back on that education and that experience, and it's helped my family, and it's helped the nonprofit on many occasions. So that's kind of where I'm at.
GAGLANI: I know we spoke about how you gained that expertise in wound care, which we'll get more into, but one thing I commented on in our call -- and on other podcasts we've had with parents of people with rare diseases -- is all the hats they wear. They become nonprofit leaders. They become caregivers, advocates, and also clinicians. In your case, it was really interesting, Heather, because, when we were speaking, so much of what Osmosis was started for was to educate nurses and doctors and health professionals, and you were pursuing that pathway before even becoming a parent of a child who needed the wound care and the rare disease advocacy. So really interesting, and coincidental and/or a sign of divine intervention, however you want to take it.
Let's turn to you, Ryan. I know your background also seems to have equipped you really well for the EB Research Partnership. Maybe you can give us a bit of that story.
RYAN FULLMER: Yes, so I'm a CPA by trade. I started my career at KPMG Los Angeles and PWC Silicon Valley after graduating from Loyola Marymount with an accounting degree. Working in Silicon Valley, most of my career allowed me to work with startup companies to multinational corporations, seeing the issues that they face, seeing how new companies are started and how they grow the fastest. I've had a number of roles in other larger companies as well, but really enjoyed working with small businesses. My expertise in Silicon Valley was venture-backed startup companies. I did about thirty audits of those a year. That was fun, to say the least.
GAGLANI: Ryan, I'll interrupt you there, because we just joined Elsevier last year. We're venture-backed series A, then we were deciding on series B or this acquisition. I will say, the audit to get the acquisition was a lot of things, but I would not say it was fun on the founder side of things (laughs). I'm glad you do though.
RYAN FULLMER: A lot of times, we come into a company where the larger public wanted to buy into them, and they were never even audited before. We kind of have to recreate the financials to help come up with the purchase price because there were no real good numbers before that. But I really loved working with those types of people, the founders, that were very involved in the business. They usually were successful in other companies before, and were trying to use their money to start some kind of new technology.
Then from that experience of starting companies, that's really served me well. Not only were we the co-founders with some other families for EB Research Partnership, I was also one of the founding board members and the CFO for the first five years of existence. We started out from almost nothing, to pulling in $5 million a year at this point, to having professional staff, a team at the WeWork office in Manhattan near Union Station, and we have people working around the clock to heal EB.
GAGLANI: It's incredible. We're going to get into this, too, but I remember in our first conversation talking about some of those innovations around EB research funding, and backing other research groups or startups that want to do this, and doing innovative licensing models. That's certainly something I think a lot of rare disease patient groups could learn from and hopefully emulate in some ways.
Before we get into that stuff, let's go to EB and let's go to Michael. Since you're the nurse and clinician on this call, Heather, maybe you can talk to our audience a bit about EB, the impact it has, what treatments are available, and what you think some of the promising potential cures are. Then we'll go to you, Ryan, to talk about Michael's day-to-day experience with EB.
HEATHER FULLMER: Okay. I'll start with more of the technical definition of EB. Epidermolysis Bullosa, or EB for short, is a rare life-threatening connective tissue disorder that impairs the skin's ability to tolerate friction, or the shearing motion, and results in skin tears and blistering that can equate to a third-degree burn. Normally, the skin has proteins that aid in the structure and durability of the skin. But with EB, the genes that are responsible for making sure the skin stays intact have mutations that prevent the gene from performing specific tasks.
Your largest organ is your skin, and it's the first line of defense against injury and illness. When somebody has a diagnosis of EB, their skin is like tissue paper, or, as we like to say, as fragile as a butterfly's wing. My son likes to say, when he sees people getting lost at the definition, "My skin is missing Velcro. There's no glue holding the top layer to the bottom layer." That usually kind of helps clear things up. The result is that even a minor amount of friction -- like say from a shirt seam rubbing on your skin, a handshake, a hug, or walking -- those can end up causing significant open wounds and blistering and other complications.
There are four major types of EB, and in the more severe types, it's not just the skin that is affected, but the mucosa as well. So, you're looking at blisters in the mouth or throat, the eyes, gastrointestinal tract, and it's this chronic state of having open wounds all the time that results in a greater risk for serious life-threatening systemic infections and an increased risk of developing an aggressive form of squamous cell carcinoma that can lead to premature death.
Other major complications that can accompany EB are heart and kidney failure. There are also multiple complications that can affect the quality of life. I know I'm kind of long-winded with this part, but just to name a few of those complications, wounds can become chronic instead of healing. They stay open. Scar tissue can form over your larger joints, and then it impairs your ability to move around. A lot of these children and young adults end up becoming wheelchair bound. Then with the repeated scarring and injury that happens to the hand, the fingers can fuse together and what happens is it forms a mitten deformity, and that fusion between digits can also happen to your toes.
Another commonplace thing is a lot of these kids and young adults have malnutrition and anemia because of the high demand for calories that are required for wound healing. If you can imagine, you're getting these blisters on the outside, but you're also getting these blisters on the inside. You're trying to take in these calories, but if you constantly have a raw throat, it gets kind of difficult to maintain the amount of calories you need. Then just to compound that, you get these blisters, and then these strictures form, and then you need these serial dilatations to open your esophagus back up so that you can eat, and then the cycle just repeats itself. You eat, then you get blisters and strictures, and then you need dilatation. So, it's this very vicious cycle.
GAGLANI: I knew about the wound care, and we can maybe talk about some of the wound care training you've done and education, but is that the ostomy part, as well? Is that why you got into ostomy, because of that issue with EB in general and Mikey, specifically?
HEATHER FULLMER: No, Michael doesn't have an ostomy; he does have a G-tube. But the ostomy portion, that just came as a professional development, along with wound care.
GAGLANI: Cool, awesome.
HEATHER FULLMER: Some of the other complications that kind of go along with this also…there's an amount of scarring that happens in the eyes. With this repeated blistering in the eyes, you get scar tissue that forms, and then that can also lead to blindness. it's kind of this whole-body, degenerative disease. It's all-encompassing. So that's kind of the overview of what EB is and how it affects the body. There's currently no approved cure or treatment. The only option we have right now is palliative care. That means using advanced dressings -- ones that absorb drainage, fight infection, maintain skin integrity, things like that. Usually, these dressings are applied to the entire body. Even if there weren't any wounds present, you would still end up covering and bandaging the body just to prevent the wounds from happening, prevent some of the deformities from happening, just delay any complications, and hopefully, maintain a quality of life.
One of the biggest complaints with EB and the bandaging and everything is actually pruritus or itchiness. These kids and young adults often become their own worst enemy because they get itchy and then they scratch and then they end up opening up and causing these wounds and having to be bandaged even more. Besides doing the extensive bandaging, things I would add to a plan of care would be administering eyedrops, maintaining a high-calorie diet, regular physical therapy, and serial procedures like dilatations and IV iron infusions and blood transfusions just to ensure a decent quality of life.
One way to recognize a child or young adult with EB is, you're going to see them come in, and they'll have layers of bandages on. That'll often include Vaseline gauze or Xeroform; you're gonna get roll gauze; you'll see contact layers like Mepilex, or UrgoTul or Adaptic Touch; you'll see tubular retention dressings like Tubifast, or just that regular netting-type dressing holding it all together, because you can't use tape.
GAGLANI: Thanks for that overview. We make videos on these subjects and we probably need you to look at and edit our script on EB. We only have a small part of one video on EB, but obviously, we're going to change that for this coming year, so I think we'll approach you, given your knowledge base and direct experience with this.
Given all that, Ryan, what is Michael's day-to-day experience? What is your family's day-to-day experience like?
RYAN FULLMER: We want Michael to live every day to the fullest. With a life-limiting condition, that's always on mind, but there are certain things we have to do. If I had to sum up Michael's day, it's probably fear and pain, unfortunately, and constant pain with the sores all over his body. The fear is really the anticipation of pain. That sometimes is worse than the actual pain. On bandage changes, before it even happens, he thinks it's going to hurt, right? He thinks of that worst time that happened when it was ripped off, and he feels like it's gonna be that. Sometimes you just have to get it done to let him relax. He is worried until he gets it taken care of.
Most of his days start when we wake him up, give him a little chance to get out of bed. Sometimes the bandages come off and the sheets stick to his wounds. You kind of have to rip them off and do some spot treating before he gets dressed. He has his medication, his food. Most of his nutrition comes through drinking, so he takes a lot of Boosts and he has a lot of formula through his G-tube. He also sometimes has blisters on his eyes, like Heather mentioned. So, I get him up a little early. It sometimes takes a little while to get his eyes open and get used to the light in the morning. Brushing his teeth and fixing his hair takes longer than normal; you can actually open skin just with a brush, either in your mouth or on your hair. Then he's off to school.
He is in eleventh grade. He's been without an aide for the last two years, which was amazing. He had someone follow him around up till then carrying his book bag. He just doesn't like that anymore; it messes with his independence and his friends. He does have a wheelchair. He can walk and move around, but with anemia he runs out of energy quickly, and the seat's also really comfortable on his wheelchair and he likes that better than the seats at school. It helps for his blisters on his behind. He does leave his wheelchair, they say, at school and goes out and plays with his friends and sometimes even sneaks off campus, but he does come back to his wheelchair because he does get tired quickly.
EB is degenerative. But at the same time, as he's getting older, he's doing an amazing job at adapting and coping and becoming more independent. So, I feel like even though it's degenerative, we're making progress on the good side every year. Then there are the bandages. Again, bandages are that necessary evil: we have to do it every day. We do it in the evenings. You have to do it to protect him, and then help the wounds he has heal.
It starts with a bleach bath, where he soaks for a few hours to make sure the bandages come off as easy as possible and then, without going into too much detail, you spot treat the torso and then do each limb individually with the multiple layers. It usually takes three to four hours from when we start to when he gives Heather a hug and heads off back into his room to play some games. We still haven't been desensitized to the screams that happen from that, or the disappointment on his face from not being able to enjoy the day-to-day things that he sees his friends do. Hopefully, someday he will, but like, riding a bike is hard; you have to get a three-wheeler. He can't run. If he does, you're scared to death he's going to trip. Eating gets rips up his throat if he eats too much, but you want him to enjoy things and try it. He loves to swim, but every time he swims, you have to go spend three hours doing bandages afterward. So, I mean, you really have to want to swim.
Even just being outside in the heat, standing outside in the direct sun, he can't do that. That's why we're happy we're in Oregon now, where there are more seasons and it's a little milder. Southern California was causing us to be prisoners inside either our home or the school buildings. The last thing I'll say, even when you hug him, you have to be careful and make sure you don't squeeze too tight. He goes, "Ow," or "A little softer." He does love hugs; he just wants them soft.
GAGLANI: Thank you for painting that picture. That's really helpful. You said he's in eleventh grade. I remember I watched that Mikey's World video, which we'll put in the show notes. It's really well done and gives you kind of a snippet of a day in the life of Mikey and your family. But since he's going to eleventh grade, what are his thoughts? Does he want to go to college somewhere close to home, or how are you guys thinking about this?
HEATHER FULLMER: I would say he's still undecided. He does say, though, that he does want to stay close to home. He wants to stick close to us, which we don't mind. We love that! He does have this interest in animating, but at the same time, he also says he wants to open up a pizza restaurant. So, I mean, it could go either way.
GAGLANI: That's also a very normal thing. If he is interested in illustrating or animating, let us know because that's something we obviously do quite a bit of at Osmosis. We have people who've done not just medical illustration—we have thirty people like that on staff—but people who have come from other types of graphic design, illustration, and the creative world. Let's put that out there.
RYAN FULLMER: He goes to a high school that has more of a career focus. So, he actually is a digital media major.
GAGLANI: That's awesome. That's great. So, let's go into actually the EB research Partnership. There's a lot to discuss there. One of the things that obviously you guys are really well known for is partnering with Jill and Eddie Vedder. Many people know Eddie Vedder from Pearl Jam. You started this EB Research Partnership. How did that come about? Can you give us an overview of the size and scope of the foundation?
RYAN FULLMER: Yes, I'll start off with that one. Jill is a really close family friend of mine. After Mikey was born, we always saw her at family events and she always wanted to know how she could help. Jill's mom and my mom were really good friends, so we were always around each other growing up. My sister was Jill's best friend; I had another sister that was also a best friend with Jill's little sister, Denise. So, on family vacations, we were always around each other. When we grew up and they saw Michael, she and Ed were always very inquisitive about EB. They wanted to learn what options of treatments existed for him and wanted to know more about it. They even wanted to be introduced to researchers. We had calls with multiple researchers talking about EB and what was out there. I think one of Ed's questions once, which I thought was amazing, was, "How much money do you need right now to cure EB?" The answer is, there's no amount of money. It doesn't work like that. But that's really where we started learning about what we needed to do.
Jill wanted everyone to know about EB, and wanted to help find a cure for Michael. We raised funds a number of years just for other nonprofits, and she had individuals giving donations directly to Stanford. But we felt like we needed to do more, and they wanted to do more. We finally got to the point where we were actually I think up at their house talking about what we could do going forward. We were successful having some eBay fundraisers. I think we raised $100,000 on an eBay auction just from Jill writing a letter about Michael and asking her friends. Tom Petty gave us a box set; Ed gave some ukuleles; we just had a one-week eBay, and they made $100,000. Jill's comment was, "Let's do as much as we can. Let's start a nonprofit," and she told me to go start it and make it big. That was always my goal, to try and start it and make it big. We always felt like we had to grow it as quick as possible. It's a life-limiting disease; we didn't have time to just grow an organization. There were other ones out there, but we wanted to get started. We wanted to try and boost what everyone was doing.
You've talked to a lot of rare disease organizations. As you know, a lot of rare disease organizations have problems even hitting that million-dollar mark on an annual basis and we knew we needed to be beyond that to really get the cure going. Money was really what was holding up the research at all the places. We met another organization in New York that had the same goal. They wanted to just fund research; they wanted as much money to go to research as possible. Me and the other father of the organization always talked about the two organizations; it really was a one plus one equals three scenario. We didn't just take two organizations and stack them on top of each other. We took two organizations that had synergies, that together really blew up. We merged in 2014. The year we merged, we became part of the Microsoft giving campaign that year. Ed played a concert in Seattle. Between the Microsoft giving campaign and our annual gala in New York, we made $2 million our first year. So not only did we hit that threshold of a million we really wanted to see, we doubled it and far exceeded it.
The next year, we were growing our team. We had another family that had multiple members with EB and their own family nonprofit joined. With them joining, they gave us a $3 million donation to help us get over $5 million in our second year of existence. The third year we did that $5 million again. We said we always had a miracle happen; every year we've been able to keep that going. But the third year was our first venture philanthropy agreement that paid out, which we'll talk about a little bit later. But since then, we've been able to sustain the $5 million plus of giving on an annual basis, which really has allowed us to continue funding the research that's working, as well as making sure there's extra money to put into the new stuff that comes up. We don't want all our eggs to go into one basket.
GAGLANI: That backstory is incredible. Actually, this could be a good time to talk about venture philanthropy, because I find that innovative. So maybe let's go into that, and then we'll turn it over to Heather to talk a bit about the cure, how hopeful we are that it's within reach, and what are some of the most promising candidates. But Ryan, do you want to talk about venture philanthropy and what other rare disease groups may learn from that approach?
RYAN FULLMER: So, venture philanthropy…we like to explain it as investing to impact social good, with a chance of return on that investment. In our early days, when we were trying to figure it out, we actually had the pleasure of being introduced to Robert Beall, with the CF Foundation. Bob was the CEO of the CF Foundation when they created their first venture philanthropy contract in early 2000. We were able to talk to him about the fundamentals of venture philanthropy. We were able to pick his brain about what percentage of return you're able to ask for and what other clauses you were able to ask for with the amount of money we were giving. He introduced us to attorneys and that's really where we were able to learn the framework of what to put in a contract for venture philanthropy.
That same year we actually talked to him in 2014, that's the year the CF foundation received the $3.3 billion as a payout on their original venture philanthropy agreements, and they're considered the first rare disease that everybody's heard of. They only have 40,000 patients worldwide, but because of the venture philanthropy and the $3 billion, everybody knows what CF is. They are a poster child, the example of what we would like to be. Hopefully, if we can get something anywhere near that amount, we will not only cure EB, but cure all the zebras out there, which is our goal. We just want to do EB first.
GAGLANI: That's really awesome.
RYAN FULLMER: If you think about venture philanthropy, it's like a mutual fund of possible EB treatments, right? If you think about venture capital, or private equity, they're really taking their money, and they're going out there investing in companies they believe in, just because they believe they'll make money. Typically, you might go out there and buy Tesla, or Google, or Meta, or these companies. You might not believe in them. You might actually might hate them, but you think they're gonna make value, and you think they're gonna make you money, so you invest in them and you put that in your pool. That's typical investing, right?
We're doing it where EB is our social impact and we're putting money in companies and actually even starting companies and building the management teams at the start to help EB, with the goal not only to cure EB, but that hopefully, something comes of it from a commercial perspective and we'll get more money that we can put back either into that, or other type of research going on out there.
What do you get with venture philanthropy? You get, potentially, returns many times over. I mentioned earlier that venture philanthropy agreement that paid out our third year. We got $3 million. It was multiple times what we put in. It might have been six times what we put in, originally. Not only did we get the payout from that, they actually took over the research, did it quicker and we didn't have to pay the future money for that because they covered that cost. I think they did it three times quicker than we were projecting it would have taken if we would have just funded it with Stanford ourselves.
There are a lot of good things that come out of venture philanthropy and having contracts. You also could put things in the contracts requiring research updates every six months, requiring updates when milestones are hit. We fund one year at a time, so every year they're showing us what they can achieve in that year. They have to come back to us to get another year of funding. When we first started, there were a lot of times people would come up to us and say, "We can cure EB. We want $5 million." We'd sit down with the scientific advisory board and say, "Okay, what are they really trying to do here?" We'd go back to them and say, "Well, here's what you're really trying to do. We'll give you X” -- which is usually a few hundred thousand dollars – “to go back and see if you can prove this works and come back to us. If you can come back to us, we will give you more, but we're not giving you the $5 million right now."
GAGLANI: That's very smart. I love how it's all frame worked. We know a lot about the VC space. One of my advisors and former board members is Alan Patricof, who helped start the VC industry with Greycroft. He kind of set a lot of those terms that we're all very familiar with now. But this venture philanthropy approach…CF Foundation did it, now EB Research Partnership is doing really well. It's fascinating. I definitely would love to have our audience check it out more. Where can they learn about it? Is there something you guys have on your site, or just Googling it?
HEATHER FULLMER: Yes, you can go to our website, Ebresearch.org, and we actually have videos that explain it really well, and even explain it in layman's terms if you're not familiar with all of the technical terms. Sometimes I get lost with them as well.
GAGLANI: There are a lot of them. Go ahead, sorry, Ryan...
RYAN FULLMER: We'd love to introduce you to our CEO, Michael Hund. He can probably do a two-hour podcast on just venture philanthropy, and he's a great guy.
GAGLANI: Yes, we'll definitely keep pulling the thread and pick your guys' brains more because we're trying to find ways to align incentives, which is ultimately what this is all about. How do you incentivize all these different stakeholders to work towards the common goal, which is curing EB and other zebras, as you said? So, on that note of curing EB, how hopeful are you that a cure is within reach, and what would it look like?
HEATHER FULLMER: We're extremely hopeful for a cure. I mean, it's a possibility now that Michael will see it in his lifetime and get to benefit from it. Just to clarify, a cure to me is a treatment that dramatically increases the quality of life and the life expectancy for those living with EB. I believe that the cure will most likely also be a combination of both topical and systemic delivery, and I don't think it's going to be a one-and-done cure, but it might be more of a reoccurring treatment that staves off symptoms and complications.
One particular treatment that we hope to see get approved in the next year is a topical for Dystrophic EB. It was created by a company called Krystal Biotech, and it's called B-VEC. It's a gene therapy that delivers two copies of the collagen VII gene directly into the wound bed, and it provides the patient's cells with the information needed to make normal functional collagen VII. The results they got from their phase 3 clinical trials showed that when B-VEC was applied, complete wound healing was possible and that the wounds remained closed at the three- and the six-month time points.
I'm almost positive it's going to get approved. This means that when it's available for Michael, we're going to be able to put it on his wounds -- and some of those have been open for years, unfortunately -- but we're going to be able to put them on these wounds, see them close and see the relief that he gets from having this pain gone. It'll be even sweeter of a moment because this particular project we supported as a nonprofit early on, and so to see it make it all the way through and to have it be a treatment that our son can use…it's gratifying both as a parent, and as a nonprofit. It just makes it all worthwhile. It's extremely gratifying as a parent, because a lot of times, you feel helpless: there's nothing you can do for your child with a rare disease. But in this one instance, you've been able to guide and help come to fruition a treatment. That's what I think about the cure.
GAGLANI: That's awesome. I can't imagine something more meaningful, something that directly affects you and your family, and then has the potential to affect many, many other people. And not just the people who are affected by it, but clearly the research being done on EB may elucidate things that could affect other, maybe more common, dermatologic or other conditions. Do you want to add anything to that, Ryan? Maybe we can transition into some of the work that you're most excited about with EB Research Partnership, and how you and Heather and your teams continue to extend the reach to increase awareness of EB.
HEATHER FULLMER: I would add, when talking about the work of EBRP, that from the time we were founded we've been able to help raise over $40 million for EB research. To make sure that those funds are applied responsibly, we established a scientific advisory board that Ryan mentioned, and it's comprised of geneticists, chemists, dermatologists, and EB clinicians. It's all to vet the research before we actually fund it. We've been able to support over 100 projects by having a call for grants twice a year, and we really try to push research forward by having a couple of requirements: one being that the research must be able to be commercialized within one to four years and must lead to a significant and meaningful change to quality of life.
We also try to use those funds to support consortiums, like that of the EB Clinical Research Consortium, or EBCRC. This is an international group of EB clinicians that treat EB patients, and they also gather data in order to develop better protocols and better procedures for the treatment of EB. So, while we're waiting on this cure, we're also trying to help in the present by getting these protocols in place so that EB patients can have better quality of life.
RYAN FULLMER: I'm glad you brought that up, because when we first started, that's why I always said, with a non-medical background, I feel like a lot of this stuff is science fiction. You hear about CRISPR and Cas9 and how it works and you're like, “I don't even understand how that's possible.” But with the scientific advisory board, it makes all of us feel happy that there are real scientists looking at it saying, "Yes, there's a chance this will work." That's all we want to hear. Plus, we also want to make sure we're funding multiple things. Even if we think something maybe looks like the best cure right now, by the time it comes out, maybe there's something better, or maybe that really isn't what we were hoping for. So, I'm glad that we're raising the amount of money we need to be able to continue to fund the new stuff that's coming out, but also continue to fund the stuff that appears to be working.
GAGLANI: Yes, absolutely. Again, that's kind of the bucket model of venture philanthropy, placing multiple bets and seeing which ones will come out. Hopefully multiple will win. So actually, to you, Ryan, again, are there upcoming events and/or things you guys are doing to advocate and extend your reach to increase awareness of EB? Anything our audience should know about that?
RYAN FULLMER: Yes, we have a mixture of events. A lot of our donations come online from large, other nonprofits or high-net-worth individuals, and we have a number of families having events annually all over the United States. We have a plunge that happens nationally where people go dunk into the ocean or a lake, all over the place. We had an annual event in New York on an annual basis, our gala. You're welcome to come as our guest of course, Shiv, if you're in the area. We're also having a virtual event that was created through COVID. Out of this horrible global pandemic, our CEO, Michael Hund, turned this time where we thought we were going to lose our biggest fundraising event, and he created Venture Into Cures. It's an annual event we've had for the last two years. We're having it again this year. We've had over a million views. Tom Holland, Spider-Man, is the actual host. There are a number of celebrities in it, and it's just an amazing event that he's used to help celebrities tell different EB individuals and family stories, which is really what we wanted when the idea of EB Research Partners first started. We didn't want to have people have to set up their own nonprofit to raise money for EB; we wanted something that everyone felt like was their own, so we could use the cumulative buying power of everyone to help push this thing along. We have a nonprofit in Australia as well, an Australian branch. They have a cotton ball in the March to April timeframe every year in Australia. So, there are things happening all over the place.
GAGLANI: That's super exciting. I remember when you told me about the Tom Holland connection, Spider-Man getting involved. I don't know what Tom's connection is, but it seems really exciting when people spend their time and their influence to help with this stuff.
RYAN FULLMER: Well, Tom I think has his own nonprofit called The Brothers Trust and they do a lot of good things, but have taken us as one of the missions under their wing. It was a connection our CEO, Michael Hund, found and it has been truly amazing for us. Then, I don't know if you've heard it, there's actually a song that Eddie Vedder wrote called Matter of Time. He actually wrote that song for the first Venture Into Cures and created a music video that was premiered at the end of our first year. If you're in your car, or near an Alexa just say, "Play Eddie Vedder, Matter of Time.” It is an amazing song. My son likes it so much that he says, "I don't want to listen to right now, it will make me cry." It talks about the journey, and it's only a matter of time until we find a cure.
GAGLANI: That's awesome. I'll make sure to listen to that after this podcast. I've already taken you both 15 minutes over what we were scheduled because this is fascinating, and there's so much to talk about. I did want to just ask one and a half more questions, if that's okay with you. The first is – and this is one that I think is really meaningful to our audience, current and future healthcare professionals primarily -- what advice would you give them, wearing your multiple hats? Heather, you're a clinician, so as a peer, but then Ryan and Heather, as people who advocate for EB research, who are parents, who are caregivers—what advice would you give to them about being most helpful to the rare disease and EB communities?
HEATHER FULLMER: My advice to any student or new clinician that ends up treating a child with EB is, you want to first establish rapport with that child and with that family. You do that by asking before attempting any type of physical contact. With EB, because it's on the skin, it can be painful. Even getting a blood pressure or temperature, starting IVs, and other invasive procedures could require taking off bandages. So, transparency with parents, listening to parents is key. They know their child's extensive and complicated medical histories, and their tolerances. You don't just want to go taking off a bandage; you could end up causing some minor trauma. So I would say, communicate with parents and just really try to establish rapport and communication.
The second thing I would emphasize is that, when you're treating a child with EB that you use an interdisciplinary approach. What I mean by that is, reach out to your colleagues in different departments and specialties. Gather a team, gather support, find people you feel comfortable conversing and collaborating with as you're developing this plan of care. You want to introduce parents early on to clinicians that are in fields like infectious disease, hematology, gastroenterology, psychologists, chronic pain specialists, social workers -- there's a number. You want to establish these specialists before they're actually needed, so that when there's a problem we're not scrambling at the last minute to try and figure out who it is we can see. This is a team that's going to be a lifeline, and a lifelong resource for the parents, so get them established early.
GAGLANI: That's some great advice for sure. How about you, Ryan?
RYAN FULLMER: Same thing. Of course, listen to the parents. We feel like we know EB, but someone else's kid would be a completely different story. It's hard when you're seeing a lot of patients to understand what that person is going through, not even just in that day, but over the last month. It's making sure you feel like you're partnering with the parent and not just this doctor that's coming in and making assumptions and thinking that they know the right answer. Because even if it is right for one child with the same rare disease, it might be different for a different child.
GAGLANI: Totally. Putting the patient first, and the care team is not just the physician and the nurse and the PA. It's, most importantly, the patient and their family and caregivers. I did want to ask, really briefly, is there anything else you wanted to be able to share with our audience before we let you go for the rest of the day?
RYAN FULLMER: We talked about how we liked the idea of having some kind of video either on wound care or specifically on EB so if someone knows they're having a patient with EB coming in, that they can sit down and watch this two-minute or five-minute or ten-minute video on specific things, so they can—not become the expert—but at least know what to ask about or what to focus on.
GAGLANI: Absolutely. We're definitely doing that. We talked about this big initiative we're doing next year to raise awareness for many of the zebras, the rare conditions, including EB for sure. But yes, we are a teaching company and we love being able to do deep-dive videos on these conditions, but also the specific knowledge that I know you both as parents, and Heather, you as a wound care nurse, know about treating EB specifically. We'll definitely be in touch about some of those opportunities.
HEATHER FULLMER: Yes, I would just add that I would selfishly love to see one made about wound care. Wound care is more than just applying a band-aid. It's a whole-body approach. It's getting to the root cause, and creating individualized plans of care to decrease healing time. Just a side note, when you're treating someone with EB, it's not the same as treating someone who has a diabetic ulcer or a burn. You're going to want to use non-adherent dressings, and avoid tape at all costs. Even the way you wrap, you want to make sure that the bandages aren't going to slip and slide against the skin, because the bandages then end up causing trauma. So, I would say there's definitely a need for wound care videos, maybe even a series of them. There's a lot of information out there.
GAGLANI: I'll definitely bring that back. I know we're getting a lot of our content CE accredited; we offer over 250 hours of CE, so this would be a perfect one to be able to offer. We'll put a pin in that and follow up.
Heather and Ryan, I really appreciate you taking the time to be on the podcast with us, but more importantly, for the work that you're doing for Michael and so many other people and their family members who have EB. It's inspiring and I wish you both the best.
HEATHER FULLMER: Thank you. Thank you for having us
RYAN FULLMER: Thank you for what you're doing with this podcast as well.
GAGLANI: Thank you. With that, thank you to our audience for checking out today's show. I'm Shiv Gaglani. Remember to do your part to raise the line and strengthen our healthcare system. We're all in this together. Take care.