Today, we sit down with Stephen Winthrop, our newly elected Chair of The ALS Association Board of Trustees to hear his thoughts on the fight against ALS and the role of The ALS Association in that fight. Stephen first joined the Association as a Trustee in 2015. He brings his expertise in fundraising, financial management, grant writing and information management services for non-profit organizations gained from a career in management consulting. He was diagnosed with ALS in November 2013 and immediately focused his energy on the fight against ALS. We are proud to be led by such a great leader and tireless ALS advocate.
Q: You have served on the Board of Trustees of The ALS Association for the last two and a half years and are now its Chair. What are your thoughts on the Board and its role in advancing the mission of The ALS Association and serving the ALS community?
A: The national Board of Trustees is a remarkable assortment of individuals with a wide range of skills and life experiences. What unites us is a dedication to help find an effective treatment or cure for ALS, and to address the needs and concerns of all those people touched by ALS. Virtually everyone on the Board has a connection to ALS and most have served on the board of one of our chapters. We all care about finding new treatments and a cure as quickly as possible.
Q: What are the biggest misconceptions about The ALS Association?
A: That is a difficult question, because of how quickly the ALS landscape has been changing and changing again in recent years. Three or four years ago, the biggest misconception about The ALS Association might have been that we were out of touch with the needs of the ALS community or were not doing enough to meet the needs of patients. Along came the ALS Ice Bucket Challenge, many changes to our national staff, several major legislative victories on Capitol Hill, and an accelerating array of scientific learning and medical advances. The ALS Association has been at the center of most of those developments. To be honest, I think public perceptions are lagging behind much of this exciting change.
Q: What role does The ALS Association play in the ALS community?
A: The ALS Association plays a unique role in many respects. By virtue of our size and geographic spread, and then indirectly through our network of certified centers, we are involved in delivering more care services to the ALS community than any other organization. When it comes to research, the funds from the ALS Ice Bucket Challenge have allowed us to triple our annual funding of research and to become one of the major catalysts of strategic research thinking in the ALS community. And of course, we continue to be the leader of public policy development and advocacy in the critically important area of promoting and advancing a wide range of public policy initiatives affecting research and care services alike.
Q: What are the biggest challenges facing the ALS community and The ALS Association?
A: We have to make sure that we do not become “yesterday’s news.” The Ice Bucket Challenge was an amazing phenomenon to behold, and it brought in $115 million to the ALS Association. The FDA’s recent approval of RADICAVA brings us our first new drug treatment in 22 years. In spite of these fantastic developments, it is sad to say that we have barely scratched the surface in the fight against this dreadful disease. We must not allow anyone to think “Mission Accomplished.”
Q: How can The ALS Association continue to improve itself?
A: It all starts with raising more money. Research is expensive; there is just no way around that reality. Also, there is always room for improvement in care services. There are thousands of people in the United States living with ALS who have not yet benefited fully from the services provided by the ALS Association. There is plenty of room for improvement.
Q: What opportunities do you see for The ALS Association going forward?
A: Technological innovations, advances in research, and plenty of headline-grabbing news and visibility all combine to bring us tantalizingly close to achievements that nobody in the ALS community could have dreamed of ten years ago. The ALS Association has never before been in such a good position to raise money and to be a major player in myriad areas of promise.
Q: How do you think your own fight against ALS informs your perspective when it comes your role as a Trustee, and now, Chair?
A: Because ALS is such a heterogeneous disease, and because my rate of progression seems to be slower than most, I refuse to think of myself as a representative of all the other PALS out there. That being said, the symptoms that follow me wherever I go and whatever I do undeniably give me a focus and a drive that I bring with me to my current role. I am quick to remind my colleagues on the board when I think a small issue is small, or a big issue is big.
Q: What is something that is commonly misunderstood about living with ALS?
A: The heterogeneity of this disease consistently ranks as its most misunderstood feature. It is no exaggeration to say that no two cases are alike. I have given up counting the number of times that I have seen people make this mistake.
Q: What’s something about your personal life you’re willing to share?
A: I am a lifelong baseball fanatic. In spite of the weakness in my arms and shoulders brought on by ALS, I am still able to enjoy attending games at Fenway Park. This past week, I achieved the nearly impossible: I got a foul ball with my feet! (Truth be told, I didn’t catch it with my feet; I sort of trapped it. But it was still a “Look, Ma: no hands” moment!)
Read more here about Stephen.