Christopher & Dana Reeve Foundation Interview
Following a debilitating horse accident in 1995, actor, director and activist Christopher Reeve was diagnosed with paralysis. He and his wife Dana devoted the rest of their lives to medical research and improving the lives of over 5.6 million Americans living with paralysis today. Their outreach, fundraising and activism has forever changed the lives of families impacted by paralysis around the world.
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November 8, 2020
Improving the Quality of Life for Those Living with Paralysis
Christopher & Dana Reeve Foundation: Improving the Quality of Life for Those Living with Paralysis
In 1987, two years into caring for a friend who was living with paralysis, Alan T. Brown sustained a severe spinal cord injury on holiday. As director of public impact at the Christopher & Dana Reeve Foundation, Alan spoke to us about how the foundation supports and advocates on behalf of millions of people living with paralysis. Their mission is two-fold; to find a cure to spinal cord injury through the advancement of research, and to improve the quality of life of those living with paralysis today. Watch the video interview with Alan here.
In 1995, actor, director and activist Christopher Reeve became paralyzed after being thrown from his horse during an equestrian competition. Shortly after Christopher sustained his injuries, he turned to the American Paralysis Association (APA). Four years later, the APA and Christopher’s foundation came together to create the Christopher Reeve Foundation, later becoming the Christopher & Dana Reeve Foundation in 2006.
Through our Paralysis Resource Center, the foundation connects information specialists and over 450 mentors with those navigating paralysis. Alan tells us “We get phone calls immediately when individuals get hurt and we jump in to make sure that they understand how to navigate the system and understand what we can do to make their lives better.” One in every 50 people in the United States currently lives with paralysis - a disruption of spinal cord function affecting the body’s central nervous system. Diagnoses can include multiple sclerosis, cerebral palsy, stroke, and traumatic brain injury.
Last year, their Quality of Life Grants Program granted nearly three million dollars to 130 non-profits to purchase things from pool lifts to gaming chairs to improve the quality of life for individuals living with paralysis.
On the research side of the foundation, much of their funding is directed to neurological, stem cell, and technological research to find a cure to paralysis. Alan spoke to us about the promise of epidural stimulators, a device that connects directly into one’s spinal cord, bypassing the injury and sending stimuli directly to the limbs.
Cure is just a four-letter word, says Alan, and as important as it is, we can’t forget about treatment and improving the quality of life for people living with paralysis. Alan quoted the dictionary’s definition of paralysis as the state of health of stoppage, inactivity, or inability to act, which he imagines many people can relate with today due to the effects of Covid-19. The foundation actively seeks to overcome these feelings with the diverse events, programs, and grants they offer. Collaborations with large organizations, such as the National Hockey League and Faded Spades sensitize the general public while supporting the Christopher & Dana Reeve Foundation’s ongoing mission.
Want to learn more about the Christopher & Dana Reeve Foundation? Visit their website to learn more about the Paralysis Resource Center, have a look at their upcoming events, checkout their blog, and follow them on Facebook, Instagram and Twitter.
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Hi and welcome today great.com talks with Alan Brown, who is the director of public impact at the Christopher and Dana Reeve Foundation, and if you haven’t heard of them before, they are dedicated to cure people with spinal cord injuries, and I will let Alan elaborate a bit more on this. And we had a really fantastic shot just before the interview. He made me laugh on three to four occasions. And I’m sure we’re going to have fun in the 20 minutes we will speak together. So, Dan, I have to ask you to please tell your story a bit again to tell the listeners how what’s your story and how did you get involved in the organization?
So I was raised in New York City. And if anybody ever watched the TV show The Jeffersons, I grew up in that building on the Upper East Side. And in 1985, I graduated high school and my best friend, Daniel Uman was paralyzed. And I actually jumped in to help take care of him and became the caregiver. And in 1987 of November, I raised twenty five thousand dollars for spinal cord research and I sent money to the University of Miami and went on vacation to Martinique. And I was in the wrong place at the wrong time. And I got hit by a wave and the undertow kind of flipped me over my head, hit the ground and snapped. I was under the water for about two minutes before my friends realized that I was not kidding and.
I was completely paralyzed. I saw my life flash in front of me and I tried to kill myself, to be honest with you. I could not move. And I was done. And then all of a sudden my friends pulled me out. And one of them is my friend Adam Schefter, who is a big sportscaster here on ESPN. And the other person that pulled me out is my friend Gil. And then David Gitter, who’s with the World Poker Tour, who runs the foundation, happened to be there. And I met him on vacation. And we got into the later about a little later.
But I have always it’s always been near and dear to me, obviously, spinal cord injury because of Danny and then when it happened to me, it became our life mission, my family’s mission to make sure we leave no man behind. And now, you know, we’re all the Christopher Reeve Foundation. And, you know, I remember when Christopher got hurt, he put a face on paralysis and we became very close and I helped mentor him. We spent a lot of time at hockey games together watching, you know, at Madison Square Garden. And there’s one in 50 Americans that are living with some sort of paralysis. And the Christopher and Dana Reeve Foundation has two missions. One, on behalf of Dana, on behalf of Christopher today’s care. And that was Dana always wanted to make sure that Christopher was taken care of and tomorrow’s cure, which was Christopher who always wanted the cure. And we have all of that bundled into the foundation right now. And it’s amazing what we do. Our resource center is free so anybody can call. We have stuff in information specialists. We have information in about 20 different languages, and everything is free to try to help people understand how to navigate paralysis and when I say paralysis, I mean, multiple sclerosis, spinal cord injury, cerebral palsy, stroke and traumatic brain injury all kind of fall under that bubble. And we make sure that we leave nobody behind.
So we have peer mentors, about 450 of them around the country. You know, like I said, we have resource guys that we’re giving out. We get phone calls immediately when individuals get hurt and we jump in to make sure that
they understand how to navigate the system and understand what we can do to make sure to make their lives better. So we also have a quality of life grants where we give out grants. Last year we gave about a little over three million dollars to one hundred and thirty three organizations that could be from pool lifts with racing wheelchairs to gaming devices, figure out to get people that are gaming and things along those lines.
So we do that where, you know, we’re constantly involved. So, you know, and then on the research side, I see what’s going on. My friends that have some amazing research stimulators inside of them are moving their legs and they’re standing up to take steps. And it’s just a matter of time before the paralysis community really, really comes to the forefront of where we really need to be. And we’re just getting there. So my story is I’ve got a little bit of everything, but my whole goal is really to make sure that people living with paralysis know that they have a place to go and we’re leaving nobody behind, whether it’s the mother or father or sister or brother, when that person gets hurt. Their whole community gets rocked and right now during the pandemic, people ask me, and I’ve been home for over 200 days, basically, I really don’t go anywhere. And if you look up the word paralysis in the dictionary, it says the state of health of stoppage, inactivity or inability to act. And we’re all feeling a little bit paralyzed right now, the same way that I kind of get held back over time with infections and skin breakdowns, which kind of is life as a spinal cord patient.
Right. I got to say that when you tell me your story, the synchronicity of it all, you are already being engaged to help your friend and then this happens to you. I got goosebumps on my neck when you told the story. And I also feel a very warm sensation that if someone has this kind of injury, that there is a community that comes to them when they’re having it. I can imagine how important it is for them to feel like they’re part of something and that also people like yourself that are so passionate about these injuries are in this community and that, yeah, are leading it. We all we all join a fraternity that we did not have to do now.
I mean, and spinal cord injury doesn’t discriminate and there’s no way you can do it’s not hereditary. You know, it’s accidents mainly to, you know, men. Eighteen to twenty five years old, you know, out there doing some kind of sports or car accidents. You know, that’s the majority. It’s kind of like what injuries we see. We see that in our resource center, you know, around the holidays, you can kind of almost a week when you’re going to get a little bit of a push of what’s going on. So it’s you know, it’s an organization that’s here to serve.
And that’s what Christopher and Dana would have wanted. And that’s kind of what I do. That’s been my mantra. And my family’s mantra forever is, you know, because that’s what we do. We’re here to help people. We’re here to give back and to, you know, let people realize that they have a better quality of life. And I know that this foundation is a little bit different from a lot of other people that you know, you’ve interviewed because I’ve listened to some before. But our Quality of Life program is about getting people into the outdoors and into the environment and being allowed to breathe and enjoy life.
So we are an organization where people want to get out and enjoy what’s out there. And so many people are doing so many more things outdoors with the new equipment and the chairs and things along those lines. My wheelchair. I don’t know if you know the inventor, Dean Kamen, who invented the Segway. My wheelchair is a
Segway to climb stairs, but the sand, grass and gravel. So it’s, you know, as its technology and technology is what’s going to help our community with treatments, because cure is a four letter word treatment. So we’re going to give us all, you know, a better way of life because one thing, one person that might not help the other. So we have to kind of see what it’s like to be one magic bullet. And the foundation is there funding research, you know, globally to help push this quicker and quicker.
Right, and I’m really curious about the research side of things, because the number you gave me that I read on your website, one in 50 people in the US live with paralysis. That was shockingly high for me. So I can see how important this kind of research is. So how has, I don’t know so much about it, how has the research developed over the last, let’s say, 10, 20 years and how is that changing the situation for those living with paralysis?
So, you know, it’s interesting. I’m three decades into this and my good friend Eric Legrand was a college football player about 10 years ago this past Friday.
And we had a conversation. I said, well, you are two decades behind.
The research now has such hope and it’s hard to say to a family when their child is lying there is ever a time to get hurt. The time is now because what’s ahead of us is all of the work that we’ve done in the labs over the past 30
years from, you know, whether it’s stem cell research or epidural stimulation or all different types of research that’s been going on, it’s now kind of coming together. And the foundation is making sure that we’re collaborating and that the people that are doing the research are talking to each other, because if they’re not talking to each other, then things aren’t going to happen quicker. And if one you know, if one researcher can spark another researcher to help get us all going forward, then that’s what we’re here to do. And like I said, I’ve seen it at the University of Louisville. It’s called the big idea. It’s our research initiative based out of, you know, that we were working on. And they every you know, the patients that I know, a lot of my friends who have been through there and have stimulators, I am jealous. I can’t wait for my to it’s worth my time and I am keeping my body, my mind and everything and, you know, in shape for that time when I know it’s my go time.
But what is the stimulator for someone that might not be familiar?
It’s an epidural stimulator that goes into the spinal cord and it’s actually kind of like a Bluetooth remote now at this point. But literally it bypasses the injury and it’s basically sending the cord, the signal from the brain to the actual limb. So a lot of my friends are standing up. They have less pain after their bowel, their control, their body temperature with something that happens. I can’t control my body temperature. I can go. You know, when I used to push Marathon’s push twenty six miles and not sweat until two and a half hours after I’ve done given the way that that’s kind of the way. And we have to be very careful as a community with this type of stuff. But the
research is out there and it’s just taking time going through it to make sure that we’re going to get FDA approval where now when somebody gets hurt, you know, get this into them earlier so they don’t have to deal with all the complications that we’ve gone through over the years and that we’re figuring out. And that’s on the horizon. It’s right here in front of us. And it’s exciting and it’s global. You know, people are cold all the time. And, you know, one of the hardest things to tell somebody, you know, what a parent calls you or friends is my son discovered or, you know, I got your number. How can you know, I hope you can help me. I can. And I’m helping you by now. Getting you through with the Paralysis Resource Center and all the guides and the mentors that we have.
An information specialist will get you through in the beginning to get to the patient to where they need.
So when their body is ready, it’s also a year down the road that they can start looking into that other part of it, because you can’t. You have to first recover from the initial trauma and then start getting on with your life. And, you know, things happen and things you know, I’ve been doing this for like thirty three years and, you know, thank God I’ve had a great time and business and family and my children and everything that I’ve done.
And I hope we kind of just lead by example to, you know, help the next guy in the next family. And I get that I have families that are, you know, right now I’m dealing with, you know, whose son got hurt six weeks ago and they’re right down here in Covid. It’s making things harder to do what I have to do.
And this is the longest that I’ve been home without being on the airplane I’ve been on since March the 7th. We’re now on October 19th. So I’m itching to go out somewhere.
But it’s a long time before I move on, because that makes me excited about your upcoming poker tournament that you have. But I just want to comment on that. The new technology you describe is really fascinating how you can recreate the brain’s neural pathways with technology and unite the spinal cord. Yeah, it’s incredible. And it affects not only the one in 50 that are injured, it affects everyone else because it becomes insurance. If some accident happens to them. So I think this concerns everyone. So because I have to ask as my background is in poker. I played professional poker for ten years, twelve hours every day. So I’m curious, what tournament are you starting?
So it’s actually crazy, this pandemic happened. And, you know, we have the Allen T. Brown fund of the Christopher Reeve Foundation. And I was just trying to think of, like out of the box. How quickly do I make sure to keep people engaged? To make sure that, you know, the people that you know are. Helping an at risk community, so I reached out to my friend David Gilbert, the World Poker Tour, and I said, David, is there anything we can do really quickly? And he said, sure, let’s do an online poker tournament. I said, OK, so I went out. We just did this back in July and we did our first one. And then that kind of led dovetailed into, OK, we need everybody that we need rebuys, that we want the zoom overlay. So we have the Refoundation Virtual Focus’s sume as well.
And it’s also fun.
And it’s hosted by a group called Faded Spade, which used to be a company that was started by a gentleman named Tom Wheaten. And he was introduced to us through David Gitter of the WPT. And what they do, they used to make the cards and they pivoted the second the pandemic happened to do online poker chatting forums. And that’s what they’re doing. So we were now November 14th will be November 11th will be our next tournament. You can go to www.ChristopherReeve.org/poker and sign up. It’s one hundred dollars to buy in. And then we do a zoom overlay. We bring in some celebrities. Some former hockey players throw people into the room and they have fun. So you’re playing on the faded spade platform and you’re doing a zoom overlay.
So webcam and everything, you get sunglasses.
Totally. So you win. If you come in the top three in any of the tournaments you go into, we’re going to do a streaming event on January 13th. So I challenge you because I came in second place. I am also the chip leader after the event of the foundation’s tournament. Now, I haven’t played in years and my dad played in the poker tournament in New York City. That is like one hundred five years old and.
I think in his memory, this is kind of what I’ve been doing, and I’m now pretty good at it and I have patience, it takes patience and you seem like an aggressive guy as a poker player, I would pin you down as a very aggressive guy.
But this has been kind of like a therapy for me during the pandemic. And we got to help me through. And it allows me to kind of relax and think. So I would let’s see what game we’re gonna have there. But I don’t know if you know the name of Amnon Filippi. Again, Amnon Filippi is, so he played in our tournament last week. And it was amazing because he was in the room with people and he’s a New Yorker and he talks like he’s playing, but he was telling people what’s going to happen. And it happened. And it was very funny to see the commentary and it was great. So we’re also using the back end of the faded spade play poker tournament of the site for our quality of life grantees to go in there the couple days before we play and just go in there to play ring Games where they can go in there with two or three guys do peer mentoring and set up a zoo or a team or, you know, a Facebook lab or whatever they want to do, go in the room. So these groups are normally getting together. We’re giving them a platform through poker to combat that social isolation. So it just kind of came around during the pandemic. And, you know, it’s something that works for us. And we had three quadraplegic at the final table last week. So it was great to see that our community members are involved and engaged and they’re loving it because they’re going to see their friends that they don’t normally get to see for a while and having a good time with it.
Also, you know, the foundation is really a home for so many people and we can just use the support of more individuals to make sure that our research gets pushed forward and that more of us have a better quality of life while they look for these treatments. So we are geared up for it and, you know, everything that we do is here to serve others.
Right, and I can really see the red threat thread, the mindset of I want to build a community here and I can imagine how important that is for someone that gets paralyzed to have this kind of home like you described around them. So imagine now that someone is listening to this. They maybe didn’t know so much about paralysis before. They’re excited. They want to help out somehow. They want to maybe even get involved in the community. What is the best thing someone can do to help you out?
Just to go to ChristopherReeve.org, it’s as simple as that. There is so much we have our Reeve community in there. We have blogs, we have videos, we have a lending library. I mean, there’s just so much information on there. We’re in the middle of right now doing a virtual 5K where we raise two hundred forty seven thousand dollars this past weekend and we want to get to three hundred thousand dollars.
And we’re just asking people to run rollerblade, swim, do whatever we have to do, 5K for somebody who can’t and try to help out. So that’s all on our Web page. The Christopher Reeve Network. If you want to play in the poker tournament and see if you could, I hate to say it, catch me at christopherreeve.org/poker. I have my outfit that I normally wear. So, you know, you can see what that is. It’s my good luck charm, but I really am glad that, you know, you and I have been able to connect.
And I kind of told you a little bit of my background before with regards to hockey being a huge part of my life. You actually being over there in Sweden. One of Christopher’s children, Matthew, resides in Sweden. And hockey is a huge part of our community. It’s really interesting how the hockey players have always been there. And we have a great working relationship with the NHL.
And this all stems from individuals that have gotten hurt, like Mikey Nichols and Denna Laing, you know, on the ice getting hurt. And hopefully we don’t get many more of those phone calls. But the league has been amazing to us. And I think you might know it is teamwork and that’s what wins. And that’s what the NHL is all about, is, you know, as I mentioned, do I got a World Series ring? I wanted to win the Stanley Cup, which is over my head, but I can’t be picky. And, you know, hockey has been great to us and it’s allowed me to grow as an individual in my life.
As I grew up with a spinal cord injury, as I mentioned, you have a background in you, I worked for Slim Fast for a very long time doing their advertising and marketing. And then I became a sports agent. And then I worked for the Florida Marlins baseball team and I had my own public relations firm, started a sports radio station down here in Florida until I finally dedicated the rest of my life, to the Christopher and Dana Reeve Foundation. Because I remember Christopher, I live with him in my heart.
Will his son, who is now in his late 20s, used to stand on my feet, looking over the boards of Madison Square Garden. You know, him and Alexandra. Matthew, you know, this is their legacy from their father. And, you know, and Dana and we as a community here to make sure that we keep that light, the torch lit and us going forward every day, which is what we do with the foundation. And we have amazing people that work with us that are helping us push the needle forward every day.
Well said, I would like to end this interview, we could talk for hours, but I would like to end the interview on these words. The words that are in my head after this hearing to speak is community, teamwork, collaboration. And I think it warms my heart to hear the work that you’re doing. So, Allan, thank you so much for speaking with us today. It was truly a pleasure.
I thank you for your help.
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