This year for my 46th birthday, I want to dedicate this year to Christopher and Dana Reeve and Alexandra, Matthew, and Will. In launching the Power WE Campaign, I thought about the Reeve family and how important they are to the spinal cord community. What Christopher and Dana believed was in helping everybody, the 1.275 million Americans living with spinal cord injuries and the 5.6 million Americans living with paralysis. It is my goal and mission to help this foundation and make sure that this community is forever heard and understood.
Alexandra, Matthew, and Will are three unbelievable individuals who Christopher and Dana would be so proud of today, to see how they have taken the torch and are doing all that they can do to make sure that their dream lives on. I have made a promise to the family to do everything I can to help make sure that this flame never goes out, for everybody who lives with spinal cord injury and paralysis.
All of the individuals who work and volunteer for the Reeve Foundation are so committed to this cause and community. I am honored to be surrounded by such a great group of people who day-to-day go above and beyond to make sure that we are making a difference.
Living with a spinal cord injury, we all have issues to deal with every day; we are all individual stories that need to be heard so people understand what our needs are and how they can help. A cure is our ultimate goal, and cures come in many ways, but we need to live now—and that is why quality of life is so important.
So for my 46th birthday, my only wish is that more people get involved and understand the Power of WE. We should make a difference; we can change lives; we can help others. So join me in helping others and take a step forward for those who can't. Visit:
www.ChristopherReeve.org/ATB25.
When I moved to Florida in 1997, I was working for the Florida Marlins baseball team, and I was brought down here at the right time. Working for that organization, I met so many great people in South Florida whom I worked with, and it was my new home. I had no idea that year we would win the World Series and I would really see what the ultimate word teamwork meant. From the locker room to the front office to the marketing department to everywhere at that stadium, everybody was focused, and we reached our goal and won the World Series. Some of these special people were H. Wayne Huizenga, Jim Ross, Mark Geddis, Charles and Rhonda Johnson, Al Leiter and the names go on and on, but in the end it was teamwork and the camaraderie we all had that really made me feel like I was at home.
Everybody always asked how they can help me down her,e and I never really did anything until October this past year, when I decided to have an event with my good friends at the Seminole Hard Rock Hotel and Casino (especially Susan Renneisen) and Passions nightclub. We put together a committee that consisted of all my friends from down here, from all walks of life, to kick off the Power of WE campaign. We raised over $75,000 that night. The overwhelming support from the peopleI have met here in Florida really took a step forward for those who can’t. My friends on the committee are priceless.
Scott Becher, Peter Nasca, Brad Elmowitz, Beth Bernstein,Leslie Wolfson, Marnie Feinberg, and many more who have really become my extended family. I thank you so much; I am so grateful for all of your support. I would like especially to thank Amy Wax for your commitment to helping me with my ultimate goal of bringing this community together and making sure the Power of WE really makes the impact on our community. Your friendship has helped me in so many ways, and you are always right there to listen and help guide me through. To everyone down here in FLA who have become friends, family and so much more, thank you for making a difference. To further support our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
From the second that I heard my neck snap, the first people I thought about were my mother and father. This is the last thing that a parent wants to see, their son lying there and nothing that they can do. With my parents by my side, every day we have started an unbelievable organization to help others who deal with SCI, and we will continue to do so because that is our family make up. But we cannot sit still as a family. We make sure that the Brown family leads by example, which is how we all grow up in our community, to help others in so many ways. Mom and Dad, thank you for being there, and I am sorry for putting you through this, but if they had to pick a family to do this to better us than the next guy. My dad might be very quiet when you meet him, but he can move mountains--and just get out of my mom's way because she will not let anybody stop her from trying to do what you have to do to help others. We all work together to help others. Mom and Dad, thank you for being by my side. You are for me and so many others the Power of We. For more information about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
I don't get to wake up like everybody else. I have to wait for a nurse to help me out. It's just because that's the way life is and has been for 25 years. I would not be able to be who I am without the people behind the scenes: my caregivers and home health aides. They literally help get me going. From my needs in the bathroom to showering, getting dressed, going food shopping, working out—everything that I need help with; they are there for me. I
t’s not easy to find individuals who understand this injury and stay with you for a long time, but I have been very blessed with some great people in my life: Dian, Glenn, Craig, Pierre, Eduardo, Sancho and there are so many more. Without individuals like you helping, individuals like me wouldn’t be able to live a life as full as possible. So thank you to all of you who come and help me with my daily needs; it is one of the hardest things for me to deal with knowing that I can’t really take care of myself on my own. You all very quietly make it look good when I am out there, and people don't really see what it takes for me to get from point A to point B. You all make it seem like it's no big deal. Thank you for all of the hard times that we have been through.
There's a movie out that everybody should see called
The Intouchables, which shows the relationship between the caregiver and a quadriplegic and those relationships that are developed. They are priceless. They are the Power of We.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
After my accident, I moved back to New York City and lived at my grandma's apartment. My younger brother was a senior in high school and was lucky enough to stay with me a couple of nights a week, maybe not the greatest idea by my parents.
I made him go to the University of Michigan, where he became friends with such an unbelievable group of guys through his fraternity at ZBT. They were always raising money for paralysis through so many different events at the fraternity, and I was so grateful to see that they were there for my brother. There was one friend in particular out of all of Daniel’s friends; his name is Jeff Miller.
Jeff was an unbelievable spirit and was always there and hanging out with us when we were going out in New York or just going to places. Jeff was a true friend to Dan and especially a friend to me. When we launched the Power of We Campaign during the past year, Jeff instantly got on board to help rally together the Michigan boys to raise money.
Daniel has been through a lot having a brother who lives with paralysis; he has been in the trenches for me, whether it's physically helping me out, talking to me every day or legally changing the way that people in the disabled community are treated. He made sure that there is equality in the New York City Marathon for individuals who race wheelchairs and hand cycles. Thank you to Jeff and Daniel for always being there, and Go Blue.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
Sometimes in life you meet people and you're not really sure why. When I met Christine Chambers Gilfillan, the second we met it was an instant connection with the two of us. We met at a fundraiser down in Miami and became very close friends from that second on. Our dedication to so many different charities while always having our eyes on the paralysis world has meant so much to me and others. I have learned so much from her and her family and how to help people in so many different ways. I am so grateful to have Christine’s family, and the paralysis world should be even more grateful that we have families and individuals like the Chambers family who are always there to help.
Through some of my toughest times since I've met Christine—which is now going to be 24 years ago—we have talked through a lot of issues, and she's been there by my side to lean on and understand what this community goes through. The Chambers family leads by example, and I am so lucky to have them to learn from. They strengthen our Power of We.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
Doctors, doctors, doctors and more doctors. I want to thank all of you for putting up with me, from the neurosurgeons to the orthopedic surgeons to the urologists to the emergency room doctors to anybody who has ever given me guidance over the past 25 years. I would like to thank all of you.
Our community is so in need of caring professionals who understand our unique needs. None of us is the same; we all need help in some way, shape or form. Your guidance has been priceless through six surgeries ranging from 8 to 18 hours. I cannot even imagine what it would be like to be on the other side. In the intensive care units, the rehabs, the emergency rooms, just being in the hospital to try to figure out what’s wrong. Your commitment is amazing.
As it gets harder to navigate the medical system because of the insurance issues, it so important that doctors remain connected to patients, especially when somebody is suffering from chronic injury without a roadmap. Doctors are part of the vital connections that make up the Power of We.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
To all of my physical therapists who have helped me for all of these years keep my body going: I want to thank you all for pushing me as hard as possible and allowing me to push myself even harder. I hope you enjoyed my ripping and making fun of you while I was doing my workouts, but it was the humor that allowed me to keep my fight going through the most difficult of times.
The suffering in the gym and the pushing my body to the limit would not be possible if it wasn't for one person in particular: Robin Smith. He is the most compassionate, caring and humble individual who cares so much about people with spinal cord injuries and paralysis and our families. He gets it. He has taught so many people the way to treat and help us. He's realistic and honest about what it takes behind somebody to keep the person going. Our physical therapists are the power behind the Power of We.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
My two biggest gifts of life are my children, Max, 15, and Sam,10. When I first got injured one of the first questions I asked was, "Can I have children?" and the answer was yes. Susanne blessed me with the two most wonderful children. Having to live with the father that is a little bit different is not fair or easy. I try my hardest to be there for them as much as I can, but unfortunately this injury does not really allow you to be as full of a parent as you would like to be. It pains me so when I miss some of their events or can't do the simplest things with them because of my injury. It might stop me physically but not mentally from being their father. I know it is not fair, and I think they understand that. I just want them to grow up understanding that their dad is doing and has done as much as I can for them, and hopefully they're learning the lesson that I am trying to put out there for everybody else is to help others. Their true colors and personalities are coming through as they grow, and I pray to see how they help to change the world as they get older. My sons are my Power of We; to learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
I remember getting a phone call that a race car driver got hurt in a very bad accident. I went down to Jackson Memorial Hospital to visit Darrell Gwynn and his lovely wife, Lisa. It was not a pretty sight. Darrell had a very bad accident and broke his neck and lost a part of his arm.
Darrell has persevered and started an unbelievable foundation to raise awareness and help individuals get by in many ways. He has leveraged his relationships in the car racing world to make sure that a different demographic understands the injury. I've been able to help and be by Darrell’s side through these tough times that we are constantly going through—infections, pain and other things that come from living with quadriplegia. We talk all the time and try to help each other through and that is the most important part of what we have, knowing that somebody on the other side of the phone is there to try to problem solve.
Darrell and Lisa, thank you for being great role models and doing what you do to make an impact on so many lives. You personify the Power of We.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
A lot of times through our children we meet new people, and through my son Max we met the Zebersky family whose son David was in Max's class. When Eddie and I started to realize that we had much in common from liking the same sports teams to being from the Northeast, we simply bonded. It was great to know that being here in Florida. Eddie has been by my side to help me navigate legal issues when it comes to dealing with paralysis and other situations. When it comes to seeing an individual who loves to help others, Eddie is the person to step forward before anybody else. He has taken me to the emergency room and sat by my bed many times when I am recovering from surgeries or just a routine hospital visit. It is good to know that he is just a phone call away and that his wife and children are just as special as he is.
The one thing I will never forget is when I took Eddie to the Giants-Baltimore Super Bowl and he happened to leave the tickets in the room. I thought he was kidding me. In fact, Eddie recalled that occasion in a very thoughtful letter that he recently wrote to share with his friends about why he supports my work and the Reeve Foundation Power of We Campaign:
I remember the first time that Alan and I spent significant time together alone. In 2001, after the Giants beat a rival in the NFC Championship game, I got a call from Alan; Ed do you want to go to the Super Bowl? I immediately said yes. I am a Giant fan and had never been to a Super Bowl. After I said yes, I must admit that I was a little worried. I did not know how to care for Alan. While I have had meals with Alan and helping him in that capacity is easy; but was I going to be able to help him shower, go to the bathroom or get into bed. Most people who have had a significant spinal cord injury which renders one an incomplete quadriplegic (and thank goodness Alan has gross motor use of his hands), give up. But not Alan. During that trip Alan didn’t need me to do much of anything. While I can’t tell you everything we did (except that I left the game tickets in the hotel room), Alan drove us to the game and was almost 100% self-sufficient. I think Alan did this because he did not want to make me uncomfortable…
Over the years I have watched Alan start a radio station, start a public relations company, and most importantly change the lives of almost anyone with whom he comes in contact. There are very few people in this world who give back more than they take. Alan is one of those persons. If you ask Alan if he was dealt an unlucky hand, he will not say yes. If you ask Alan whether he is depressed because he can’t presently walk on his own, he will say no.
Alan has dedicated his life to helping those who were dealt a similar hand. Alan travels the country speaking to groups, politicians and friends about what can be done for people with spinal cord injuries. He talks to people with injuries and their families in a way that only he can relate. Alan puts these people at ease and more importantly gives them hope. And, by showing through example, he lets that 21 year old football player or the 45 year old firefighter know that the chair is not a death sentence but just a wall which can and should be scaled.
To support our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
I'll never forget that Saturday afternoon when I was watching college football and got a phone call from NBC broadcaster Bruce Becck that a kid from Rutgers University went down. After seeing the hit and hearing about Eric Legrand, it hurts me to see a young man in his prime go down and have to fight every day the world of paralysis as opposed to the gridiron.
As I usually do when I hear of an injury of any sort, I try to reach out to the family-- in this case it was more than a family; it was a team, a school, a community. It was much bigger. When I finally got a chance to spend time with Eric in person and on the phone, I learned there is more about Eric LeGrand -- he is bigger in so many different ways. The way that he has handled his injury, the way that he helps people and of course that smile-- it's priceless. As I have gotten to know Eric and his mom Karen and they have formed Team LeGrand here at the Reeve Foundation, it is great to see how committed they are to helping our community band together and to the Power of We.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org.
As we are building a groundswell of community members, we started the the Public Impact Panel (PIP) with Shawn Friedkin, Sabrina Cohen and Jennifer Longdon. I am honored to be working with these important leaders around what we are doing and where we are going. Spending three days in New Jersey with everybody was probably the most informative and eye-opening experience that I have had since my injury to see how other people really cope and are honest with each other about feelings, struggles and many other issues.
It takes people who are pioneers to start a movement, and that's exactly what we are doing.
Living with paralysis is not easy, nor is helping others always as simple as people might think. We look at the community from different angles with the same goal in mind of helping others and making sure that our voices are heard. With a large community of over 1.25 million Americans living with spinal cord injury, everybody sees and feels the injury at a different time and reacst differently. As the Reeve Foundation grows PIP along with the Reeve Peer & Family Support Program, our community will be better served and able to help more people. It is the ultimate power of WE.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
Our story is amazing. It started as two kids at prep school on Manhattan's Upper East Side and ended up in wheelchairs fighting for a community. I will never forget when I got the phone call that Danny was hurt -- I was devastated and felt hopeless; I wanted to do as much as I could to help. Organizing a fundraiser in November of 1987 was the least that I could do for a good friend going through a tough time, and then the tables turned as usual. I had to one up Danny; he broke his back so I had to break my neck. The first call that my parents made was to Danny's father after my injury, and his family was instrumental in getting me out of Martinique and back to the United States to Jackson Memorial Hospital in Miami where they were able to save me and put my neck back together. Our story is one that is hard to believe, but us working together right now helping this community is what the power of WE is all about.
We have gone through some tough times over the years, but when push comes to shove we are always there for each other. The way that we act around each other-- it really is an unbelievable thing to see. We are like Oscar and Felix, two guys with different styles but the same heart to make sure that the spinal cord injury community does not go unheard. Whether I'm calling Danny or he is calling me in distress, we are both there to make sure that the other one is okay. Through these times that are sometimes unbearable, both physically and mentally, our friendship is so unique, but we don't just do it for ourselves.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25. To support the Reeve Foundation Daniel Heumann Young Scientists Fund, please visit
www.ChristopherReeve.org/Daniel.
When I was first injured and was looking for places to turn, there weren’t many places for people like me to go. One of the first individuals that I met was Henry Stifel as well as his family; they were pioneers in the spinal cord injury world. Unfortunately, Henry suffered an injury over 30 years ago and his family had the wherewithal to fund research to find a cure. With their hard work and dedication to this field, they became one of the leaders and have changed the way that we now look at research today.
Over the years, Henry and I have had many conversations about our lives and how we are always there for each other. I am honored to call Henry my friend, and I learn from him in many ways, especially in the quiet way that he maneuvers while making a huge impact in the lives of so many people. I am grateful for Henry’s friendship and for all he does every day.
To learn more about our Power of We Campaign, visit:
www.ChristopherReeve.org/ATB25.
