Thank you for helping me reach my Walk to Defeat ALS® fundraising goal! This is an exciting opportunity for us to work together to support those affected by ALS and to spread awareness of the urgency to find treatments and a cure.
Our team walks in memory of my mother, Virginia Allain, who sadly lost her battle with ALS and passed away on August 1, 2019. This year's walk being on Halloween will mark the five year anniversary of Mom's diagnosis of ALS on Halloween of 2015. We also walk in memory of our grandfather, Bryan Allain, and Mom's first cousin, Mark Allain.
Before Mom's official diagnosis at the age of 63, we knew. My sisters and I knew from the moment she said she was having trouble buttoning her clothes. Our grandfather, Pop, had started with the same symptoms around the age of 65 and sadly, was misdiagnosed for years, even undergoing carpal tunnel surgery to "fix" the problem. Pop died 9 months after his diagnosis of ALS at the age of 69. He was the first in the family to be officially diagnosed with ALS.
Later, we found out that Mom's first cousin, Mark, had been diagnosed...in his 40's. Even with 2 people in our family having ALS, we still did not think that this "rare" disease would come back to haunt us again. Boy, did it come back with a vengeance! Mom was the 3rd member of the Allain family to be diagnosed with ALS.
With the money raised through the ice bucket challenge a few years ago, our family's gene was identified. We were devastated to find out what this meant for our family-Familial ALS. This gene has the capability to affect generations of our family for years to come.
Now we walk without our beautiful mother, who was so full of love, life and laughter. It will be a bittersweet day for us, but we ask all of those who loved her so dearly to join with us in celebration of her wonderful life, and in hopes of preventing further loss to ALS.
This is a terrible disease that destroys a person's ability to move, speak, eat, and breathe, causing full-body paralysis and ultimately death. Specifically, Familial ALS can wipe out generations and entire families. We walk in honor of our family, but also in honor of all families battling this disease with no treatment or cure.
The past few 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. WE CAN'T STOP NOW!
Please consider walking with me or sponsoring me so that generations to come have hope! With your help, we will be able to make a difference in the lives of people affected by this disease.
Why We Need Your Help
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.
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
ALS can strike anyone. Presently there is no known cause of the disease, though support is bringing researchers closer to an answer. In the meantime it costs an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to bring help and hope today!
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