All the fragmentation and divisiveness in the ALS advocacy community can be discouraging. But the past few days have also reminded me that just beneath the choppy and roiling surface are deep currents of cooperation, coordination, and commitment to unity of purpose. At the operational level, where it matters most, the community is doing a much better job of working together.
First was the news that three ALS non-profit research funders – ALS Finding a Cure, the ALS Association (ALSA), and the Muscular Dystrophy Association (MDA) – announced a joint $2.5 million grant to support a promising multi-year ALS clinical trial. That is a great example of combined efforts to fund research, which will yield greater efficiencies and scale.
Next, I traveled to my local ALS support group in Charlotte yesterday, and there was very pleased to hear how the three main ALS service providers in the area – ALSA, MDA, and the Joe Martin ALS Foundation – routinely work together to combine resources in support of people with ALS and their families.
Finally, this afternoon I joined a conference call for a task force assembled by ALSA to help conceive and execute an important project. I was blown away by the number of people willing to volunteer significant time to this project despite having full time jobs. Many to most on the task force are people who have lost a loved one to ALS and who are giving their time and expertise to help strengthen organizations like ALSA dedicated to finding a cure. Those of us with ALS don’t thank nearly often enough those many volunteers, who really make these organizations work.
2 thoughts on “Undercurrents”
Your advocacy is so inspiring! Three cheers for you. Sending you support and looking for ways to support finding a cure for ALS up in my neck of the woods.
Beautiful reflections, Ken. If anyone can keep a wide range of passionate stakeholders focused on a common purpose and moving the agenda forward, it’s you!