Part of the reason the blog was so late, was that in addition to being extraordinarily proud of our efforts to help our community, I am moved by FTP’s commitment to a cause intimate to me. This year my partners, led by my guy, Jeff Forbes, decided to make a sizable financial contribution to I Am ALS – a 501(c)3 organization that drives collaboration, builds and provides critical missing resources for the ALS community, drives increased awareness while we seek a cure. It is personal to me, because I am on the Board of this extraordinary organization, and I have Amyotrophic Lateral Sclerosis (ALS). I really am ALS.
ALS is often known as Lou Gehrig’s disease and is a neurological condition that aggressively affects voluntary muscle function leading to death on average within two to five years. Consider that Gehrig died from the disease slightly more than two years after the “Iron Horse” played his last game in the Majors. No one has ever survived in the more than 150 years that ALS has had its name. No one. But the past is the past and this is about the now.
Just after Forbes and I began together, he called me out in an “Ice Bucket Challenge” video. He was hilarious and awesome and made me laugh out loud – as he has a tendency to do. I was a bit self-conscious, so I did some research, thanked God I didn’t know anyone with ALS, and opted to give $1,000 to the ALS Association (never did the IBC video). Little did I know that only a few years later that life would come full circle.
I shared my diagnosis with people in 2018 and for several months tried to figure out which group I could get involved with helping. Turns out that this awful disease brings out powerful, raw emotions and fear in people facing it. Unfortunately, that creates tension between groups who should be working together toward a common goal. Anyone who has ever been involved in politics knows that disparate voices vying to speak for one community can create inaction. Such was the environment as I read it.
Then, in late 2018, I talked to a remarkable guy named Brian Wallach. He and his equally remarkable wife, Sandra Abrevaya, were launching I Am ALS. He was diagnosed about the same time the doctors puzzled out what I had. Brian had spent the interim time studying everything about ALS and the community and putting together a posse. He pitched me on his belief that the system and the community had to start listening to each other and organizing to work together or we were both going to die of this disease.
I’ve never claimed to be all that smart, but one of my strengths is recognizing a good idea when I hear one. His was brilliant, and hey, what were my choices? So, I joined him as he and Sandra put together an amazing Board of Directors and launched in January of 2019. FTP took on I Am ALS pro bono and every single FTPer who has engaged has brought something incredibly meaningful to the table. It means the world to me that people want to help change the trajectory of this disease.
As we close out 2019, I can honestly say that I Am ALS is changing the ALS space. The community has engaged and are participating in the process. We championed doubling funding for research at DoD because our men and women in uniform deserve better – and we won. We brought together all of the major governmental and non-governmental funders for a first of its kind collaboration to name and address the challenges to rapid progress. We are pushing agencies to make ALS a priority because it can be a gateway to solving a myriad of neurological diseases. With four wonderful Congressional co-chairs, we supported the launch and growth of the Congressional ALS Caucus. In ten months of its existence, the caucus has over 80 members! It grows because its members are making a difference. At the core of all of this is the patient. People with ALS deserve more than sympathy, our condition deserves attention.
Jeff and the FTP family did not wait for me to ask for a donation. They asked “How much would be meaningful to I Am ALS? Because we want it to matter.” Just like our team tackled the Holiday Toy Drive, I am grateful to all of FTP for their willingness to take my need on their shoulders.