My Personal Walk to Defeat ALS Page
On Saturday, May 6, 2023, I am participating in the New York City Walk to Defeat ALS. I am committed to raising $$ this year because I’m trying to do everything I can to make an impact on this disease. I have a very personal reason to walk and raise money - I will be walking with my sister Melanie who has been diagnosed with ALS.
Our team name is BehanStrong. ALS has been an unwanted hand me down in the Behan family. My grandmother Leona, my mother Cappy, my uncles Jerry and William and now Melanie and my cousin Patrick. They carry the SOD 1 gene which is extremely rare (only 10% of ALS cases are genetic). You may have heard that the FDA recently approved a new drug Tofersen/Qalsody for SOD1 carriers. Melanie and Patrick have been receiving this drug over the past year and are both still here and it is slowing progression. Truly a miracle. In addition, the Atlas study is following gene carriers with no symptoms (like my cousin Alexis) and will administer Tofersen when they detect a rise in a key biomarker prior to any symptom onset. It is time to end this terrible legacy and tell a new Behan family story.
Together, we can create a world without ALS.
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