The following is a conversation between Dr. Donald Wood, President & CEO of the Muscular Dystrophy Association, and Denver Frederick, the Host of The Business of Giving.
Denver: The Muscular Dystrophy Association, or MDA, is the number one voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of families.
And here to tell us about their work is Dr. Donald Wood, the President and CEO of the Muscular Dystrophy Association. Welcome to The Business of Giving, Don.
Donald: Thank you, sir. I appreciate being here and look forward to it.
Denver: You know, you couldn’t have answered this question when you guys were founded in 1950, but I can ask it of you now. What is muscular dystrophy? And what do we know about this disease?
Donald: That is exactly the question that the families asked when they founded the Muscular Dystrophy Association, “What is this disease that we have?” And the answer was “We don’t know.” What did they know then? In 1950, they did not know the genetic material.
All muscular dystrophies, virtually all, have an inherited component or are inherited. Therefore, today, we know that the defect that causes the disease is first to be found in the genetic material, our DNA. But we didn’t even know DNA was the hereditary material in 1950.
Denver: That’s right. That’s right.
Donald: The other thing we didn’t know is we didn’t know how muscle worked. We knew muscle contracted, made force. We didn’t know how it relaxed. We didn’t know how it went back to being forceful. So, we didn’t know how normal muscle worked. So, imagine the hope and dream of a family that says “We don’t know anything about our disease, and we need to do something about that.”
But then they had another problem: To whom did they go? There was not one scientist… this is not an exaggeration… there was not one scientist in America studying muscular dystrophy. They looked all over the place. Were there any physicians who even knew what muscular dystrophy was? Because remember in those days, in medical schools, genetic diseases were considered untreatable, and there were no courses in genetic diseases.
No doctor, no physician looking at patients had they ever been treated… had they ever been educated in genetic disease. But they did find one doctor in Cornell, a fellow by the name of Dr. Ade Milhorat, who had set aside one bed in his clinic for analyzing people with muscular dystrophy.
So, the founders did something that is actually done more in America than anywhere else in the world. And that is they went knocking, apartment by apartment, because they were in New York, and they raised $5,000, and they took it in a bag, and they gave it to Dr. Milhorat. That’s how MDA started.
And the other aspect though is very important: They knew it was not only new knowledge they needed, which could only come from research, but they also needed people. And so, from the beginning, MDA raised money, not only to support research, but to attract scientists and physicians to the field; there wasn’t really a field… “Would you study our disease please?” kind of thing.
And it is true that what has happened is because of all the donations that America has given to the Muscular Dystrophy Association over these years, has created the entire medical field of neuromuscular disease science and medicine. It did not exist without the dollars donated by a generous American public.
Denver: Fascinating story. You know, anytime I can’t figure out anything about an organization, I always ask them their founding story, because so much is baked into that founding story… and we’ll get to the telethon a little bit later, but the telethon really started, as you said, with knocking on doors in an apartment.
I mean, it was essentially the same thing. So, I tell you, I’d like to have some of their DNA in terms of being intrepid. Because today, you know, at a standing start, not knowing where to go, you just start, you just do it. Well, you know, you mentioned gene therapy there a moment ago, Don, and I know that is something very close to your heart.
So, I’m going to ask you to take us back to that day in 1986, when one of the most significant breakthroughs to ever occur in this field took place.
Donald: Well, like I said, all muscular dystrophies are genetic diseases. And once we found out what DNA was, you had to go through a long period of time trying to figure out the genetic code, what it did. And in the early ‘70s, you still couldn’t study human DNA.
So, I want to know just how early that was, but you hear a lot about AI right now, but I’m a big fan of creative intelligence found in human brains, and there were a handful of investigators around the world that had some great ideas.
And, my own story, real quickly, is I started at Columbia Presbyterian Medical Center studying muscle. I eventually started studying human muscle and muscular dystrophy, and I was a grantee of MDA, I mean, at one point.
And then I became head of MDA research, and I developed an area we call the Task Force on Genetics. And the whole point of the Task Force on Genetics was to go after a gene underlying Duchenne muscular dystrophy, the most severe form of muscular dystrophy that hits children.
It’s what’s called a sex-linked disorder. It affects boys. They end up in a wheelchair by age 12, and in those days, didn’t make it through their teenage years. So, under the Task Force on Genetics, we wanted the best minds in the world to try and tackle the genetics of this disease.
So, we put together a symposium at Cold Spring Harbor under James Watson, one of the Watson and Crick of DNA, the smartest people in the world I could find there… they’re about 25 folks, who studied various aspects of genetics. And we decided to keep going until we figured out a pathway to do it.
And on Saturday night, after 36 hours of virtually nonstop, you know, some very good thinking, one of the smartest guys in the world at the time… he’d been on the cover of Time magazine as one of America’s 25 top scientists, he looked up and he said, “You know what, guys?”, and hope I can say this, but it is a biblical term, he said, “We wouldn’t know a gene if it came up and bit us on our ass. None of us have ever seen one… none of us have ever seen one. So, how are we going to go forward?”
And somebody else shouted out, “Ah, we’ll figure it out as we get there.” That was 1983. And NIH wouldn’t fund the research. We were the only ones funding the research. And there were three labs in the world: one at Oxford, one at Harvard, and one up in Toronto at Toronto Hospital.
And the group at Harvard, led by Lou Kunkel, was the one in 1986… he called my office, I’ll never forget it, and he said, “I think we got it, Don.” I jumped on a plane, ran to Boston, looked at the data, and there it was. He and his team had found the gene underlying Duchenne muscular dystrophy at a time no one believed it’s possible to identify a gene underlying a disease when you didn’t even know what the gene did.
We didn’t know at that time whether the gene expressed a protein in muscle or a nerve, or some other organ. So, it was incredible. And after that, it took another year, year and a half, and he identified the protein, and they named the protein that the gene was supposed to make, dystrophin.
And the irony is naming it after a disease. All of us who don’t have the disease have dystrophin, and all the kids that have muscular dystrophy, they need dystrophin, and they don’t got it.
Denver: There you go. I want to pick up on something you said about NIH because I was speaking to somebody at the Lasker Foundation… you know, they have the medical awards, and I asked her one time, I said, “Is there any common thread that runs through all the illustrious members who won the Lasker award?” And she thought, and she thought on, and she said, “Yeah, one thing, they were all turned down by NIH for a grant.”
Donald: That brings me back to one of the central points that I hope everybody in the audience here hears. The reason America is the leader in identifying new treatments for diseases in any area is that we have the biggest philanthropic voluntary health agency support by the public of any country in the world.
Neuromuscular disease science and medicine were created by the donations of people to the Muscular Dystrophy Association. There was no medical field like that before. And I could go down a whole list of other diseases the same way.
And NIH is there once we’ve done the risky part and found the gene, et cetera. Now, they’re there to pick it up, but we have spent in developing this field over a billion dollars of public money. That’s fantastic. It really is.
Denver: Yeah, well, if done right, philanthropy is the risk capital of society, and that’s what it should be; and then the government can scale it, and that’s the way it should play out. And that’s exactly what you’ve done there. Well, you now have the Gene Therapy Support Network, correct?
Donald: You bet. We now have something that those families in 1950 with hope and a dream were looking for, and that is for the first time in human history, we have treatments that work for people with neuromuscular diseases. They are living longer, they’re living stronger, they’re becoming more independent.
Denver: And, if I guess right, I guess precision genetics would be the next step.
Donald: Yeah. Precision genetics is something that’s still more in the research phase than it is in the clinical area. But precision genetics is where we’re going. It’s an individualized approach to treatment.
In genetic diseases, the body is missing a chemical piece of itself. I mean, now you got to put back the chemical piece. But I’ll bet you everybody in the audience knows we are all different. You’re putting a chemical piece back…. may be the same chemical piece, but you’re putting it back into different bodies, different chemistries, different, different human sort of things.
Precision genetics takes that into account, allowing physicians and the medical support team helping families or individuals with these diseases adapt to and minimize side effects.
Denver: Still to come. But that’s where the journey is taking us. You know, there have been some game-changing drugs made available for things such as spinal muscular atrophy and other things. Give us a rundown of some of the highlights of what you’ve seen in terms of these drugs that can really help people like never before.
Donald: Well, the great vision for this field of what I’m going to call genetic medicine, the medical profession and the general public hasn’t seen anything like it in history.
And the very first one of these situations, where we actually take a healthy gene and put it into a patient whose gene didn’t work, which is basically the core of genetic medicine, was spinal muscular atrophy in 2014. Less than 10 years ago, the very first one of those treatments occurred.
And from that, we are now seeing progress in a dozen or more diseases moving towards gene therapy. The FDA, just this June, approved the very first modified… a modified gene therapy, but is a gene therapy, for that most deadly of muscular dystrophies, Duchenne muscular dystrophy for the first time in history.
Can you imagine? The gene of the Duchenne muscular dystrophy was the first gene ever discovered that underlined a human disease without knowing the protein product. And now, it’s one of the very first to have gene therapy. All of it funded by the generous folks in America who have supported MDA. All of this research pretty much has been supported by MDA.
Denver: Yeah. And if you do that, I guess through your MOVR Data Hub; you don’t do it through that, but that’s alongside you. And, tell us a little bit about that and how that is really aiding in the development of clinical trials for promising new treatments.
Donald: It’s a complex answer, but I’m going to try and simplify it down. Genetic diseases, like muscular dystrophy, you see the problem in the skeletal muscle, obviously, that’s where the progression occurs. But these proteins occur in other areas.
So, there’s cardiac involvement, pulmonary involvement; sometimes, the brain is involved. And the way in which you have to approach genetic diseases is what we call the multi-disciplinary clinic treatment. We were the first to put together the multi-disciplinary clinic back in the ‘80s.
That is now the standard of care, Now, how does that answer your question? It is very complex genetic diseases, and the amount of data that are generated from analyzing the natural progression of the disease in each individual patient, the kinds of supplements they may be taking, medicines they may be taking, tons of tons of data, huge amounts of data. Well, our MOVR Hub is a data hub for all that information.
We have over 150 clinics across the nation. We see over 90,000 patient visits. Those data, lots of those data, now go into this data hub. Now, what’s the point of having all that data in that data hub?
Now, when a drug company wants to develop a drug to treat this disease, et cetera, they can look at the data in the data hub instead of having to go out and find these patients themselves; we’ve already got it.
We’re shortening the time it will take for pharmaceutical companies and biotech companies to actually not only identify the drugs that could treat these diseases, but most importantly, help identify which patients fit the drug of choice they’re looking at.
So, the short story is this data hub is the only kind of data hub in the country where we have collected all of the clinical data. We’ve got the patient information data all there. When I talk to physicians nowadays, what I tell them is, “When you diagnose a person with a neuromuscular disease, the very next thing you do is prepare them for a clinical trial.”
Denver: Yeah, right.
Donald: Put the data in the data hub, and now we can show pharmaceutical companies: Here’s what we have, here’s where we are, and here’s the opportunity to create a new medicine.
Denver: Well, pharmaceutical companies or biotech, anytime you can remove the friction and make it so they can get started, it sometimes just gets them off the block to make the big, big difference.
Don, you’ve often spoken about how crucial patient involvement is in the research. How does MDA bridge the gap with patients, and how are their voices shaping the path of research and new treatments?
Donald: Well, remember, in 1950, we were founded by patients.
Denver: Well, there you go. Baked in the DNA again.
Donald: It’s their dream and their hope that animates us today. They wanted to live longer. They wanted to, you know, have individual lives, et cetera.
And you cannot do, and I’m saying this intentionally, you cannot do effective genetic research and genetic medicine without working with patients, without having patients help you. Genetic disease has never been treated before. We’re in a whole new area, Denver.
People don’t know what to expect. These are progressive diseases. We know that they’re the ultimate, you know, pre-existing condition. You’re born with the defect, right? And so, the earlier you can start treatment, well, that should be helpful.
But a lot of these folks, they’re in their teenage years, their adult years. Now, when you add a treatment, you don’t know what to expect. They’re not going to get out of a wheelchair. That’s not what the treatment does. Treatment could stop the disease, but they’re not getting out of a wheelchair; but are they going to feel better?
Well, only the patient knows if they feel better. There’s no test for that. And you need to talk to the patient. If you’re not talking to the patient about how they feel about this treatment at their age and with their kind of disease, then you’re not performing an appropriate clinical trial. We’re learning from the patients.
The thing is every patient with a genetic disease is… I hate to say this word but I don’t know how else to say it… their own experiment. You’re learning the first time… this is the first time we have a young girl, 9 years old, spinal muscular atrophy.
The kind of spinal muscular atrophy she had throughout human history, nobody lived beyond age two. And now with the genetic therapy that she has, she’s 9 years old, she’s going to school; she’s being a regular kid.
How does she feel? Is what she feels the same as a 9-year-old who doesn’t have spinal muscular atrophy and doesn’t have this treatment? We’re learning every single day from people that guide us, the patients.
So, at the Muscular Dystrophy Association, you don’t get to work here unless you’re participating with families and patients and know who we’re talking about because they lead us. They really do.
Denver: Yeah, well, beneficiary voice. They know better than the scientists very often; they know how they feel and what’s working and what’s not working. It’s just incredible data.
You know, you mentioned about this network you have across the country. Tell us a little bit about MDA Care Centers. And, they’re really, you know, best in class, comprehensive clinical care centers at top- flight institutions. Tell us a little bit about them and what happens there.
Donald: Okay. Yeah, we do have over 150 clinical care centers staffed by physicians, and supporting health care workers, and I said, multi-disciplinary folks who know about neuromuscular disease… have been trained and educated in neuromuscular disease.
And that 150 care center network formed before we had even the treatments. So, now, people are starting to come to the treatments. I’m going to do a particularly bold-faced effort here and say, This is why we need far more money than we have. We have to add to the care center networks.
We have to add to the treatment. Why? Because these treatments are coming so fast. And treating people with a genetic disease is very complicated. You cannot go to an individual physician practitioner and get that kind of treatment and expect it to work. You have to go to a multi-disciplinary clinic that has a ton of support around.
You have to be capable of following that individual who’s under treatment virtually every day. You can’t treat a thousand kids at a clinic. Even big clinics can handle, you know, 5, 10. why? Because they take so much time.
So, we are at a point, and actually the physicians have come to MDA, and they have asked us to put together conferences–which we have done starting this year– to identify what it is that a clinic needs to have to be able to treat patients effectively in this new environment and what new training they have.
And out of those discussions, we have developed a gene therapy support group specifically for families to help guide them through what is actually very complex. Plus, we haven’t got to this yet: it’s expensive, and so they need insurance coverage. So, we do advocacy for individuals.
For insurance companies, we show how to get through some of the complexities of that to both the physician and the individual with the disease because they have to work together. So, huge amount of complexities involved.
We are expanding our efforts in that area. And right now, as far as I’m aware, we are the first and leaders in having a specialist in gene therapy support network for families struggling with… and treatments for genetic diseases.
“When you look at all the kinds of complexities these diseases have, and yet we have kids in wheelchairs who’ve lived their whole life in a wheelchair, and we figured out how to do zip lining for them.”
Denver: Speaking about kids that you did a moment ago, and another reason you need money is the MDA Summer Camp. Give us a little sense of what it’s like. What do those kids experience?
Donald: We have board members, okay? We have a judge in New York. We have a CEO on the board. We have an entrepreneur, and every one of them went to a summer camp back in the day, and they said it’s still the best experience of their lives.
It was a game changer. When they had this disease, they thought they were isolated. They didn’t have any hope. Then they come together to MDA Summer Camp, which was designed to have fun, meet folks that are, you know, struggling with the same sort of thing you have.
And what you hear over and over from the folks who go there… and then the moms and dads who bring them there is: It’s been a life-changer. They’re so much more confident. Now, with the internet, they stay connected with each other. They stay connected.
We’ve treated over a hundred thousand folks who have come to summer camp over the years. And now, we have some… several thousand that come; we do both an in-person and a virtual summer camp. These are highly specialized camps.
We have physicians, nurses 24/7 at the camps because some of these kids have so many different kinds of medications. When you look at all the kinds of complexities these diseases have, and yet we have kids in wheelchairs who’ve lived their whole life in a wheelchair, and we figured out how to do zip lining for them.
Denver: Oh wow.
Donald: And they love it. They love it. It gives them a feeling of freedom they’ve never had, and it changes their mindset about not only their disease, but it changes the mindset about themselves. And summer camps are probably the greatest boost to these folks in terms of their feelings of independence, and they have something to offer.
So many kids come out of there and say, It was at summer camp that I decided to go to college. It was at summer camp that I decided to go out and get a career. It was at summer camp, et cetera, et cetera. So, the support for summer camps folks, pour it in because I cannot tell you how important it is to the lives of the folks that we serve. It’s making a difference.
Denver: Oh, no, you’ve made the case very persuasively. You know, in other organizations I’ve worked with sometimes… and they’ve had these kinds of get togethers, you feel like you’re the only kid who has this. And then you see a bunch of other kids, and you say, Wow!
And the other point, too, is that, you know, your parents can be helpful, your counselors, your teachers, your scientists. There’s nothing like peer learning, you know, talking to somebody your own age. “How do you handle this? What do you do?” You know what I mean? And there’s a bonding that just really lasts forever. It’s really just a great program.
You know, you mentioned advocacy a second ago, you know, around insurance and other things. Tell us a little bit about your efforts, whether they be at the state level or in Washington, D.C.
Donald: Oh, we go where the action is. We go to Congress and the FDA.
Denver: You’re the only person who’s ever said that’s where the action is, but I’ll let that go.
Donald: No. President Biden called us out in terms of… we really,…MDA and our leadership helped move the act for ALS, the biggest support system for ALS, through Congress.
Had we not been there, advocating and doing our thing in talking to both sides of the aisle, because we do get support from both sides of the aisle, that act for ALS never would have gotten through. As important, MDA is now recognized as leaders, for example, in transportation for people with disabilities.
We have now on staff an individual who actually knows how to write legislation. And so, he’s worked with both Republicans and Democrats. We got things in the latest FAA bill to have lavatories for disabled people on every aircraft. It’s in the bill. It’s our language.
We’ve got it in there, and we are pressing for it. And in that pressing, we are so well-known that we have now been invited to the White House. We have met with Vice President Kamala Harris, the Secretary of Transportation, Pete Buttigieg, and we were one of 15 organizations invited to speak with them about progress and what can be done at the executive level for that.
So, the White House knows us. We know them. We are in communication. The FDA knows us. We work with the head of the FDA. He was our keynote speaker, Dr. Peter Marks, at our medical scientific conference this year.
Why? Well, because treatments for genetic diseases are brand new. The FDA is trying to put into place an expedited approval process for that, which we support, but it’s still controversial.
So, my point is when it comes to advocacy, this is the single most important time to be effective in advocacy, whether it’s for getting support for ALS, whether it’s getting transportation and getting the transportation field in line to help people with disabilities or insurance, which is something that all patients need.
And we like to feel we’re on top of it. And we are well-known and being invited to the highest levels in the government now.
“They are considered thought leaders in this field. That’s the way in which we can stay on top of things. We bring thought leaders. We bring thought leaders to healthcare. We’ve got enormous support from the clinicians who are at the forefront of genetic medicine.”
Denver: Cool. You know, we’ve mentioned multi-faceted and multi-dimensional, and I’m just wondering how you orchestrate all this and have it work together. I mean, we’re talking about all different types of research and the clinics and the care centers and the camps and the advocacy, and I’m only touching on it. How do you pull it all together so everybody’s going in the same direction and everybody knows what everybody else is doing, so the whole is more than the sum of the parts?
Donald: It’s all about getting the right people in leadership. You want to get a team together that all goes in the same direction, has the same passion, et cetera. And that’s what I have. I am fortunate. I have got professionals in every area that are recognized leaders nationally. I could pick anybody, but I’ll pick Dr. Sharon Hesterly, the head of our research group. Sharon is invited internationally. Our team of researchers is still involved. They publish, they get involved with the things we know.
They are considered thought leaders in this field. That’s the way in which we can stay on top of things. We bring thought leaders. We bring thought leaders to healthcare. We’ve got enormous support from the clinicians who are at the forefront of genetic medicine.
They are people that can trace their roots, just like I can trace my roots, back to MDA funding, back to getting trained in neuromuscular disease. We are a growing organization, but we kind of know each other. We kind of know each other, and we all come together at the medical scientific conference.
This last year, we had like 2,000 folk, 27 countries, virtually all the major players, and that’s from NIH, as well as medical centers and other areas; they all come together. And they all know that, you know, we all sort of work together.
And in the field of neuromuscular science and neuromuscular research, we are now in what we call the era of treatment, and the whole field is shifting towards how we do better at treatment. Remember, you asked me about our data hub called MOVR, the data hub, et cetera.
The data hub shows that going to multi-disciplinary clinics has all by itself improved the outcomes for people with neuromuscular disease. Now, they don’t have to travel around hundreds of miles, going to this doctor and that doctor, et cetera.
All the data is right there in the same place for that individual. You talked about precision genetics. This is where it starts, in the MDA clinics, right there.
Denver: You know, before we discuss some of your current fundraising initiatives, share with listeners the history of the Labor Day Telethon, perhaps most closely associated with Jerry Lewis and the Love Network, if I remember.
As a matter of fact, I think I mentioned before we began, I did a little Hop-A-Thon when I was a kid to raise probably 50, 75 cents or whatever. But you know, for people who want to recall that period or maybe younger listeners, tell us what it was like on Labor Day in America.
Donald: Oh, I would love to. Just a quick background. You know, I told you about, you know, 1950, you know, the hopes and dreams, et cetera. The very first local telethon, the folks that started MDA were brilliant. They created the first telethon, black and white TV, no color TV, no national network in New York. And, the host was Eleanor Roosevelt.
And so, they started developing telethons then. Jerry Lewis and Dean Martin had a huge radio program back then. And in the early 50s, they mentioned the Muscular Dystrophy Association at the end of their program and MDA got more money than they’d ever had.
And for his own reasons, Jerry Lewis stayed involved, and he would go to hospitals to meet with kids. He met with families. He did that on his own dime. And then the CEO of MDA at the time, he and Jerry Lewis, they were just the tightest of friends.
And so, in 1966, they started the Love Network,and that’s when Jerry Lewis, you know, started the telethon; and there were folks in Nashville and Houston and other TV stations that began.
At its peak, I think the Love Network… I won’t have the exact number, but the Love Network hit over 220 stations across the nation, and what people don’t realize is, clearly, it was a lot of entertainment.
But when you parse out all the time, what was the time of the telethon spent, you’ll find that the bulk and majority of the time was spent talking with families and with people with neuromuscular disease.
That was the way the public first began to really know about what it was like for people with muscular dystrophy, et cetera. And that’s when I think folks really jumped in, like the Hop-A-Thon.
The Hop-A-Thon, maybe an individual could raise, you know, $2 and a half dollars or 25 cents. It didn’t matter. It totaled millions over the course of time. So, it was that connection. And, MDA and the people that we serve…these are rare diseases, genetic, incurable at that time. In 1966, they were still incurable.
There still was not good diagnosis, but getting a chance to meet with the families, which has changed all of us and changed me, I know that..it had its impact, a very positive impact. The public supported it, and that’s how we ended up growing and finding the gene and now getting to the era of real treatments. That’s when it really started.
“And I go back always to the generosity of Americans. When we tell the story of what we’re doing, when we let them meet with the families and the people that struggle with these diseases, they not only open their hearts, but they also provide the absolutely necessary dollars that we need to expand.”
Denver: A great Labor Day ritual. It certainly was. Well, you still have a lot of roots in the grassroots. You have “Fill the Boot” and MDA Shamrocks program and things of that nature. Give us a little sense of what you’re doing today. And look, all non-profit organizations are challenged to raise money; give us an idea in terms of what your fundraising is like and some of the initiatives that you have undertaken.
Donald: Well, I have to say that we are truly blessed by the support of the National Letter Carriers. They started with us over 70 years ago, and they continue to this day. And then the International Association of Firefighters, they started about 70 years ago. They have continued to this day. They have become so iconic.
I visited the Smithsonian earlier this summer, and there’s actually a display at this Smithsonian as part of America’s great culture. There’s the Fill the Boot campaign that has raised and continues to raise huge amounts of money. I think over the course of the time they’ve been with us, it’s almost three quarters of a billion dollars they’ve raised.
And we have long-term folks like that. We have other long-term folks, CITGO. They started with us 37 years ago, and they are stronger than ever. They are building. They are growing. They’ve invited me to speak to their business organization in terms of they want to support us more and grow with us more.
Why? Well, we have all these clinics in areas that they operate. They’re raising money for, you know, folks in their areas. And it’s very effective and very appreciated. Then, we have Harley Davidson. They’ve been with us, oh boy, I don’t know how long. And I’ll tell you, summer camp kids can’t wait to see those Harley Davidson guys coming in with their bikes and stuff like that.
They love it. I mean, when I tell you that summer camp changes people’s lives. When you got a Harley Davidson group driving into a summer camp and all the noise and the power, and all those kids get to do what other kids got to do… you know, get the ride. They get to be part of that. Acosta, geez, I think they’re going to hit $100 million this year.
So, our fundraising has been very successful on working with organizations that have stayed with us for a long, long time and are becoming stronger as we go along. And they deserve credit for all the work that they’ve made possible in terms of developing these new diagnostic approaches and treatment approaches, et cetera.
In terms of going forward, we have teams of people, obviously, that go out there and fundraise in difficult times. I mean, you know, we do a lot of events, and when there’s a hurricane, when there’s problems in areas, well, that hurts. But we are an organization that has learned to pivot.
We take the hits, but we also get all the benefits. And I go back always to the generosity of Americans. When we tell the story of what we’re doing, when we let them meet with the families and the people that struggle with these diseases, they not only open their hearts, but they also provide the absolutely necessary dollars that we need to expand.
And we need a lot right now. The treatments are huge. I want to make sure that everybody gets into a clinic who can, you know, get the treatment. And the only way we can do that is to continue to expand our clinics and to continue to expand our outreach to families.
Denver: Seize the moment. No question about it.
Donald: That’s right.
Denver: Finally, Don, with everything we have talked about, what is your overarching vision for the organization over the course of the next decade?
Donald: My overarching vision for the organization is to continue to complete what those early founders, you know, and their hopes and dreams there. I am looking to develop more and more treatments and even cures for these diseases.
We have a long way to go. Like I said, the gene therapy, these are progressive diseases. And you get a gene therapy, it might stop it, but how are you going to help the individual get muscle back? How are you going to do that? So, that is ahead of us in terms of research over the next 10 years.
I think that the other aspect of research in the next 10 years is how to incorporate AI. People talk about, you know, artificial intelligence. Does it have a role in medicine? And my answer is: absolutely. It can speed things up. I can use AI to go through our data hub of information, a huge amount of information on families and patients with neuromuscular disease to help drug companies move faster.
I can use AI, or they can use AI, to screen drugs more quickly, more effectively, even to design drugs. That’s where AI can come in. Where the genius has to come in, where the new scientists and new physicians and new trainees have to come in… is coming up with the creative ideas to be able to understand what AI is giving us and moving in that kind of direction.
So, we will, in the next 10 years, see more individualized medicine, which we term as, you know, precision genetics medicine, which becomes more and more effective and reduces the side effects. We just had a drug approved by the FDA for steroid treatment. Steroid treatment’s been around for decades.
Terrible side effects. This new one doesn’t have those side effects. So, by this time next year, virtually, all the thousands and thousands of patients on the old steroids will be moved to this new one, which will help them.
So, we’re making advances to improve the outcomes of existing treatments, and you’re going to see an acceleration of that over the next 10 years. Precision genetics, improved advancement for existing therapies, and improved understanding for how we treat folks. That’s what you’re going to see in the next 10 years.
Denver: Exciting times and important times. For listeners who want to learn more about MDA or financially help support this work, tell us about your website and some of the stuff they’ll find there.
Donald: Well, please do go visit the website www.mda.org. As Denver says, you can find how to donate. You can find out more about the disorders, and don’t hesitate to send messages to us. We have a whole group of folks that are there primarily to provide more information.
This is not a group of disorders that everybody knows about. This is a rare group of disorders, but they have a huge impact on millions and millions around the world. And we’re making a difference in that.
So, come join us, come to our website, learn a little bit more about us. And if it moves you and helps you, please, please don’t hesitate to donate. Remember, Hop-A-Thons donated a couple of bucks… five bucks, 10 bucks.
I’m not here to ask you to donate huge amounts; donate what you can. But know this, for 75 years, those donations have made a difference, have created a field of medicine that is now giving people life that never had it before.
Denver: Unfortunately, I’m afraid that my Hop-A-Thon would probably raise less today than it did when I was six. But I mean, that’s just life. What are you going to do? Dr. Donald Wood, thanks so much for being here. It was a great pleasure to have you on the show.
Donald: Thank you, Denver, for inviting me, and I truly appreciate the opportunity to talk to your great audience.
Denver Frederick, Host of The Business of Giving serves as a Trusted Advisor and Executive Coach to Nonprofit Leaders. His Book, The Business of Giving: New Best Practices for Nonprofit and Philanthropic Leaders in an Uncertain World, is available now on Amazon and Barnes & Noble.