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A United Approach to ALS Research

By Dan Quinn,  ALS United Mid-Atlantic Board Chair

In the second half of 2023, we officially became ALS United Mid-Atlantic. This separation allows us to retain our independence and preserves our nationally recognized care programs. When we announced this change, many of our supporters asked what this meant for the future of ALS research.

As Board Chair for ALS United Mid-Atlantic, I want to promise you that not only will we continue to fund advances in ALS care, but we plan to take bold and collaborative steps to lead on ALS research in every way possible. Our board, our ALS Treatment centers, and our staff are deeply committed to doing all we can to discover new treatments for ALS, improve quality of life, and finally put an end to ALS for good.

We have seen significant progress in research in the past few years. The FDA recently approved new treatments for ALS, including Qalsody, the first gene-based therapy for ALS. This means that people with ALS now have a greater variety of FDA approved treatments available to them, including Radicava, which was approved in 2017, and Riluzole.

Thanks to the tenacious efforts of ALS advocates, Medicare is approving new equipment for people with ALS and Congress has increased funding for ALS research, including through the ACT for ALS Act, which was signed into law in 2021. On a state level, Pennsylvania, New Jersey, and Delaware are all funding the ALS cause at higher levels than any time in the past.

We are now partnering with groups like ALS TDI (Therapy Development Institute) on research projects and expanding our advocacy through teamwork with I AM ALS. Our board meets regularly to fund exciting research projects here at our amazing local ALS Treatment Centers and through our growing ALS United network of scientists.

For over 40 years, ALS United Mid-Atlantic has expanded the possibilities for ALS care and research. YOU make this possible by donating, advocating, and volunteering. Our mission is to UNITE AND EMPOWER the ALS community. Let’s show ALS just how powerful we can be when we unite to end ALS together. Join us at www.alsmidatlantic.org and follow on social media @alsmidatlantic.

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