Amyotrophic Lateral Sclerosis was first described in 1869. 150 years later, not much has changed. People are still dying from it and the prognosis for those diagnosed is still about the same. Sure, there have been advancements in symptom management which equates to a more comfortable passing. But that is basically it. We still have no effective treatment or cure. People are still struggling to afford to manage their disease. There is still no real sense of hope. That is where we can make progress to change this.
Earlier this month, I had the distinct honor of joining a group of advocates, patients and caregivers , in a meeting with the US Food and Drug Administration. For those in other countries, this is the government entity that has the sole power of approving every medication for use by American citizens. The goal of the meeting was to address issues of concern about drug trials, access to experimental medication and creating a liaison within the FDA for direct communication. I believe that the conference went well and that the officials present were receptive to our requests. Our impact remains to be seen, but I am optimistic.
Along with the FDA meeting, the More Than Our Stories rally took place at the Capitol. Members of the ALS community converged on Congress to engage their representatives and share their stories in person and call them to action. This week, in Washington DC, Rare Disease Week is taking place. Once again, advocates will be calling attention to undertreated diseases like ALS.
So, what does this have to do with you? We need every hand we can get in the movement ! We are fighting for OUR own lives. No one is going to do it for us. Everyone who is able can contribute. You don’t have to go to DC to be an advocate. Hell, you don’t even have to leave your home. There are numerous things you can do. If you have access to the Internet, you have power at your “fingertips”. You can email your representatives on all levels. If you are on social media, share your story. Engage with the ALS community. If you are incapable of doing things on your own, but you have a desire to be involved, recruit family and/or friends to become involved. They can share their stories, too, as they are equally important.
We are stronger together. No one is saying that any of it is easy. Far from it. I don’t know about you all, but I want to see a real change in the trajectory of this disease. But it is not going to happen on its own. The world needs to hear our stories. It needs to hear our voices. Any chance I get, I will share my journey with others. I don’t speak all that well these days, but I will sum up any energy I have if it will create awareness. There are so many great organizations out there to contribute to. It doesn’t have to be financial. It can be through providing for research or clinical trial. Even just sharing my blog with others is driving awareness ! (shameless plug, lol)
The bottom line is, we can effect great change. We need to band together in every way possible. It is long past time for us to have hope for our future. If any of you need direction or leads to be more involved, please do not hesitate to reach out to me. I am happy to lend a hand.