Deb Winters

Aug 10, 2024

But I have turned my focus on what I can do: Shining the light in dark places, bringing joy and hope to those living with ALS. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) on March 10th, 2022. On that day, those three letters – ALS – rocked my...

Sarah Parton

Aug 10, 2024

Knowing that future generations may be given this diagnosis make me more motivated than ever to prioritize and fight for pre-symptomatic treatment, expanded genetic testing, and genetic research funding. My name is Sarah and I have ALS. This is a disease I have always...

Victoria Purdum

Aug 10, 2024

5/2/22 I was diagnosed with ALS via a genetic test that showed a C9ORF72 mutation. My name is Victoria Purdum and I live in Maine. 5/2/22 I was diagnosed with ALS via a genetic test that showed a C9ORF72 mutation. My wife, Trudi Chase, is my caregiver. I have limb...

Edward Belair

Aug 10, 2024

I’m doing everything I can. I was a 70 years old in very good health. Very active. 8th July 2022 got bitten by a tick — bad rash but Lyme was negative. 1 month later I was unable to even walk my dog. It took until August/September of 2023 to get the...

Kermit Peterson

Aug 10, 2024

My spirits and attitude are good and I embrace my path. I have had right drop foot since January 26, 2023. Since that time I have had 5 months of PT, dry needling, a steroid shot in my lumbar region, 2 acupuncture visits, 3 EMGs, numerous blood tests, and 3 MRIs. I...