To start, let me address the elephant in the room. Seventy-seven years ago, Lou Gehrig passed away from ALS at the young age of 37 and we still do not have a cure or treatment that can halt the progress of ALS. It has been too long. So what do we do about it? The answer to this question varies depending on whom you ask. Some will say the answer lies with research, and I agree. However, to effectively eliminate a complex disease like ALS, we need a comprehensive strategy that identifies and addresses ALL of the problems created by this monster.
First, we need more funding for research. We must fund the best science wherever it exists in the world and we must do this in a collaborative way. The ALS Association is the largest private source of funding for ALS research in the world and we will not stop until we eliminate ALS completely. Next, we must leverage our collective voices to influence public policy. The ALS Association opened its Public Policy office in 1998 and leads the effort to advance ALS causes with our government. Victories include influencing over $1 billion in ALS research funding, eliminating the two-year waiting period to receive Medicare benefits, protecting access to complex rehab technology, obtaining presumptive eligibility for Veterans benefits, creating the National ALS Registry and so much more. If you have not signed up to be an ALS Advocate, please visit our website today. This only takes a few minutes and it is perhaps the most effective way to make a difference. Finally, we must provide care and support for the families impacted by ALS today. Did you know that multidisciplinary ALS clinics are not profitable? This is why The ALS Association provides funding to help them operate. Richard Bedlack, MD, PhD, once said, “Of all the things that we’ve ever found to fight ALS in 100 years of research, multidisciplinary clinics are the most powerful thing, and those only exist because of the charity of The ALS Association.” We are fortunate to support five outstanding ALS clinics in North Carolina. The clinics are where the clinical trials happen and the clinics keep people healthier longer so that they can participate in clinical trials. Other ways that we help include counseling, free loaner equipment, grants to help ease the financial burden, and support groups.
To sum it all up, everything that we do supports the discovery of effective treatments and a cure for ALS. It takes all of the parts working together. So while I am frustrated that ALS is still a problem, I also wake up every morning knowing that we will solve it. There are so many brilliant and passionate people working on this problem. I know that one beautiful morning, we will receive the breakthrough we have been working so hard to achieve. And what a glorious day that will be!
President & CEO, The ALS Association North Carolina Chapter