New York City Walk ALS: Mrs. Joy O'Gwen - The ALS Association Greater New York Chapter

This year my dear friend, Melanie was diagnosed with ALS.
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. ALS can strike anyone, and presently there is no known cause or cure-Melanie, has a rare form of ALS-please read her story-

ALS has been an unwanted hand me down in the Behan family. My grandmother Leona, my mom Cappy, my uncles Jerry and William and now myself and my cousin Patrick. We 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. Patrick and I have been receiving this drug over the past year and we 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.

That's why I'm walking. To change the statistics. To bring help and hope to those living with the disease. To ensure that no one ever hears the words: "You have ALS" again.

The past two years have brought incredible advancements in ALS research, expanded access to care for people living with ALS, and enabled legislation that impacts the quality of life of people with ALS and their families.

But we can't stop now. The key to a cure begins with you.

Please consider walking with me or sponsoring me. With your help, we will be able to make a difference in the lives of people affected by this disease.