I have a rare form of ALS called FUS p525L mutation. The only other person I knew who had this merciless disease was my identical twin sister, Alex. She was diagnosed at age 11 and I watched her die on Valentine’s Day in 2011.
This past Christmas, I found out I have this relentless form of ALS and my life has already changed so much since that moment. I went from driving my car to using a walker in just 2 months. And now I need a breathing machine when I sleep at night.
Right now, there’s no treatment or cure, but there is a GROUNDBREAKING experimental drug call ASO.
Time is not on my side. But I have hope. I have one life and I want to fight for it with everything I’ve got. I just need your help!
WHERE THE $$ IS GOING:
Researchers are currently working on the groundbreaking experimental drug called “ASO” that could save my life.
This process requires $700,000 and is being designed specifically for my severe form of ALS. It is a new procedure that will be considered a "Compassionate Use" for me. We have divided the fundraising efforts into 7 phases. With the money we've raised at my benefit on April 13th in Spencer, IA, we are into phase 2 now!
My only hope is to be part of this treatment.
Please give if you can TODAY & GIVE ME A CHANCE TO LIVE!
COWGIRL UP FOR JACI: HELP SAVE A LIFE.: DONATE NOW
Keep updated on my journey by following me on Facebook: http://bit.ly/CowgirlUpforJaciFB
- Susan Klamkin
- Megan Abel
- Tom Bohrer
- Joe & Regina San Fillippo
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