ALS Virtual Town Hall Brings Community Together

In a lot of ways, the origins of the “town hall” meeting are uniquely American. Sure, community gatherings have been happening from the time there have been communities to gather, but since the early days of colonial America, the gathering of a group of concerned individuals to be updated on current events has been a time honored tradition that persists to this day across the country. The idea has become so much a part of us that we don’t think twice that “town hall” can easily refer as much to a meeting as it does to a building.

But just because the town hall concept is old doesn’t mean it has stayed the same, and in 2020 when nothing seems normal the concept has had to evolve even more. What might have in the past been in-person gatherings have become virtual, expanding the scope and reach even further. But the basic idea of gathering a community to be updated on current events remains.

In just such spirit, our Chapter hosted a virtual town hall meeting in September to discuss the current state of ALS care services, research, and advocacy. Members of our community were able to hear from experts in these areas and ask question to the speakers. The full 90 minute recording is available for all to view.

For many attendees, the most impactful part of the town hall came from Gail Boyea. Gail lives in Wildwood, Missouri, and was diagnosed with ALS in 2018. Gail shared her journey with ALS from her early symptoms through diagnosis and now living with the disease. She told everyone how she and her husband have had to make changes to their active lifestyle but how she is still able to walk short distances with the aid of a walker.

Even while describing the challenges she faces, Gail attitude was an inspiration to all. “Despite my diagnosis I am happy and continue to live a blessed life,” she said, citing the support of her husband, family, and her church community.

After Gail’s moving presentation, Kuldip Dave, Ph.D., Vice President, Research, for The ALS Association shared details of the current state of ALS research, including the recent promising developments around AMX0035 and the scientific reasoning behind trying to provide this promising treatment to as many people with ALS as soon as possible. Dave also highlighted some of the ALS research being done right here in St. Louis.

“We have an extremely diversified (research) portfolio right now in terms of what we are testing,” Dave said. “The take home is that it’s an exciting landscape full of diverse approaches, and that’s what it is going to take for us to go after this complex disease.”

All of these research projects require funding, including from the government. As such, Mark Calmes from The ALS Association’s National Board of Trustees and St. Louis Regional Chapter Board of Directors updated the community on current advocacy efforts. He detailed all of the efforts on the national and state level to encourage law makers to support the ALS community. The town hall ended with a question and answer session.

The largely remote world we are living in has at times made it both easier and harder to connect with others. But for one evening the ALS Association St. Louis Regional Chapter was able to bring our community together in the true spirit of the first town halls to learn more about ALS current events and how to become more involved. If you are interested in attending future virtual town halls or discussions, please contact Katie McGovern at kmcgovern@alsastl.org or 314-432-7257 ext. 222.

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