The ALS Association could pour all of its resources into research. We could eliminate our ALS Clinic Support Program, which funds five multidisciplinary ALS clinics and tele-health in North Carolina. We could end our Supportive Care Program, made up of 10 in-person Connection Groups, five Telephone/Online Connection Groups and our new Peer Support Program. We could terminate our Financial Grant Program, Loaner Equipment Program, Care Connection Program, Public Education and Awareness initiatives and our ALS Resource Guides. After all, research will lead to a cure and remove the need for care, right? I wish it were that simple.
I believe the most likely scenario is that scientists will cure ALS in people who have a genetic (familial) form of the disease first. For non-genetic (sporadic) ALS, which accounts for about 90% of all cases, new treatments will be developed. In time, people will live longer and longer with the disease until eventually they will live full and normal lives.
My point is, research is critical and continues to be a top priority, but we cannot turn our backs on the people who need us now. Not only would that be heartless, but it would be completely irresponsible. It would slow down progress towards developing new treatments and ultimately a cure for ALS.
Providing compassionate care and support is important. People with ALS who receive support are happier and if they attend one of our multidisciplinary ALS clinics they live longer. If they live longer, they can participate in more clinical trials. Do you see where I am going with this? We must provide excellent supportive care in order to achieve our vision of creating a world without ALS.
One of my favorite songs is “You’ve Got a Friend,” by James Taylor. The lyrics are very comforting: “When you’re down and troubled; And you need some love and care; And nothing, nothing is going right; Close your eyes and think of me; And soon I will be there; To brighten up even your darkest night.”
If you are reading this, you know how tough ALS can be for the person living with the disease and their family. No matter where you are in your ALS journey, our goal is to make life better, to empower you, to be your friend. As James Taylor so eloquently wrote, “All you have to do is call.”
This newsletter is intended to highlight the many wonderful programs that we offer. I hope you will enjoy reading and learning more about them. We would not be able to do what we do without committed and caring people who generously donate their time, talents, influence and finances to support us. Thank you for believing in what we do and I hope to see you at one of our Walks this spring!
This is my third letter in a series, addressing the three components of our mission which are research, advocacy and care. If you missed my first two letters, you can find them online at www.alsnc.org in the “About Us” section under “News” or they are in the last two issues of our newsletter.
President & CEO, The ALS Association North Carolina Chapter