“I was not new to under-standing spinal cord injuries.” In 1985, his best friend became a paraplegic in a car accident. It was their senior year in high school. “When Danny got hurt, I just knew I needed to do something. Organizing a fundraiser at Sports on Broadway on the Upper West Side was just the beginning.” Alan raised $25 thousand in crucial funds for spinal cord research, and sent them off to Dr. Barth A. Green at University of Miami in December, 1987. What happened next changed Alan’s life, and would impact the lives of thousands of people with spinal cord injuries for years to come: “I ended up there six weeks later. Go figure.”
Not long after, Alan and his brother took action in Alan’s hometown of New York City to foment change for wheelchair athletes in the world-renown New York City Marathon. He sets the scene:
“Back in 1990 when I did my first marathon, they started the wheelchair division about four hours before the race actually started. A lot of the streets were not closed in Brooklyn, and when I finally got to Central Park ahead of the lead runners, I was physically stopped and told I could not continue.”
He says this was his first taste of discrimination, and being stopped from finishing the marathon in 1990 was frustrating. “I ended up being a little bit aggressive, and getting my point across, and they finally let me go.” Alan’s brother, Dan Brown, an attorney, saw what happened, and was moved to lead a class-action lawsuit on behalf of a group of wheelchair athletes.
In 2000, Dan won the pro-bono lawsuit, and that year, the New York City Marathon introduced a separate wheelchair division that featured prize money. Alan clarifies the point of his advocacy for equity and change for wheelchair athletes: “We are not on the course pushing 26.2 miles just to inspire other people, we are there just like everybody else: to finish a race. That was my first big push-back that I had to deal with. But in the end our solution paved the way for so many other individuals to participate.”
Alan credits his father with his drive to make things right, and to help people as a way of life. His role model, he recalls his father advising, “It’s not about recognition, it is about getting things done.” When he asked his father why anything should be done, the response was always, “because that is what we do.” Still, Alan leaves one with the impression he loves not just the act of helping people, but the act of engaging with individuals and bringing them together.
People are drawn to Alan, as well. His longtime friend, Dr. Jason Cohen, praised Alan during a recent episode of his podcast, Gross Anatomy. “Everybody knew and loved Alan growing up,” Jason said. When Alan is asked about Jason’s remark, he says he always was just a people person. “I think it’s just my personality and being a real New Yorker. My family was in the retail business and I was always working there as a child, interacting with individuals.” Alan says his commitment to helping others runs deep: “I always saw the community in New York, coming up where I grew up, and our synagogue, giving back,” he continues, “and that is the fabric of who I am.”
It was only natural that Alan would become involved with another family whose commitment to service runs deep: the family of Christopher and Dana Reeve. After attending a conference in Washington, D.C. at which he first understood what the Reeve Foundation meant to people in the paralysis community, he met the Reeve children. Later, after they were introduced, a special friendship developed between Christopher and Alan. “We went to hockey games and had many conversations together. I keep him and Dana very close to my heart all of the time. I am lucky enough to be friendly with all three of his children.”
Today, Alan serves as Director of New Partner Engagement for the foundation, and his own Alan T. Brown Fund, thrives within it directed by his mother. Alan is delighted by any opportunity to talk about the Reeve Foundation’s programs focused on ‘today’s care, tomorrow’s cure,’ including their flagship National Paralysis Resource Center. Over 20 years the foundation has awarded $34 million in Quality of Life grants to nonprofits that need help funding programs to assist people living with paralysis. In addition, the National Paralysis Resource Center serves 100,000 individuals and families each year through free programs that include certified peer mentoring, advocacy, and research.
Alan shares that COVID has made it challenging for people dealing with new injuries to navigate their situation, and isolation presents a challenge. He’s proud to note, however, that the foundation and its network of teams has been able to do much to mitigate that. “During COVID, the foundation has actually done so much work to help educate individuals living with paralysis on so many different levels through the National Paralysis Resource Center.” Alan is a certified peer mentor in their Peer & Family Support program, which has helped approximately 11,000 people in 40 states.
When he considers the short term versus the long game, Alan would like to see more change that improves quality of life and opportunity for the more than 5 million Americans with paralysis. “I have been hearing the word inclusion for decades, and hopefully now the world itself, and companies as well, are ready to be inclusive. Hopefully corporate America will start hiring more individuals with ability, and more people will stop seeing people’s disabilities.”
As a frequent traveler, he sees a need to eliminate everyday challenges of navigating public facilities that people without disabilities often don’t realize exist: “We need to make sure that when individuals with a disability want to travel, they do not have to go through so many hurdles just for a trip that somebody else would normally take. It would be great to get on the plane with ease, check into a hotel knowing that the bed is the right height, and you can use the bathroom as well as public transportation.”
To address those challenges constructively, another foundation Alan co-founded, “Access Israel helps individuals without disabilities through experiential learning and interaction how to better work with and understand what inclusion is all about. Whether it’s going into high schools, colleges or local religious communities of all ethnicities, the different programs that the organization runs change individual lives on both ends of the conversation.”
Alan believes as part of improving their quality of life, people with paralysis can learn to advocate for themselves to counter misconceptions. “Most people with a disability have amazing ability, and that is what people need to see. People should not look at others for what they cannot do but for what they can do.” Alan illustrates what he’s learned over the years about the role of agency in improved quality of life: “When one becomes paralyzed, they need to make sure that they advocate for themselves. One should always stand up for their rights, and not be afraid to reach out and ask for help.” Alan’s foremost advice? “Don’t focus on the negative; focus on the positive.”
As a mentor and advocate, Alan wants to see change for people who are recently paralyzed: longer rehabilitation stays; better insurance benefits to assist overburdened families; and most important, coverage for proactive and preventive care to help individuals lead healthier lives.
As a man of action focused on the future, he’s ready to do more to help people with paralysis, and to build connection and community among them and people who want to help find a cure. “I feel the next few years for the foundation and the paralysis community are very bright. There is some amazing research on the forefront right now.” He is enthusiastic about epidural stimulation, which is implanted, as well as transcutaneous stimulation that is delivered above the skin. “I have seen the results first hand, and it is amazing to see the progress individuals are making.”
What is Alan most hopeful about?
“I feel that people with numerous disabilities are going to benefit in many ways from what is going on. As we say at the foundation, ‘Go forward every day.”
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Alan T. Brown Fund
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