Thank you for helping me reach my Walk to Defeat ALS fundraising goal! The Walk to Defeat ALS raises funds to support those affected by ALS and to spread awareness of the urgency to find treatments and a cure.

 

My team name is BehanStrong. 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 my family and others living with ALS. 

 

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. 

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis. ALS can strike anyone, and presently there is no known cause or cure.