Let's Body Slam ALS for the Tri-State Trek's Fundraising Page (2012)
For Don Abbott and Alex Hermstad, two ALS angels in heaven, and my Facebook ALS / muscular dystrophy family
I WANT TO BODY SLAM ALS TO THE MAT.
WITH YOUR HELP, ALL OF US CAN DO IT TOGETHER.
This summer "I'll Be There to Cheer" for the second year in a row for the ALS Therapy Development in honor of Donnie Abbott and Alex Hermstad, two people whose families I've grown to know through Facebook, who lost their lives to ALS (Lou Gherigs' Disease) in 2011. This is in addition to my existing work for the Muscular Dystrophy Association and Jett Foundation for Duchenne Muscular Dystrophy Summer Camp Programs. The picture on this website front page is from last year's Trek with some of my friends who rode for those who can't.
WHAT IS ALS?
ALS is a disease in which muscle-controlling nerve cells in the brain and spinal cord (motor neurons) are lost, resulting in rapidly progressive paralysis and usually death within three to five years of symptom onset. The disease is not familial (inherited) most of the time. The incidence of familial cases is thought to be 10 percent of all ALS cases, and 20 percent of the familial cases are due to mutations in a gene called SOD1.
WHO INSPIRED YOU TO DO THIS, JAMES?
Alex Hermstad was a young, healthy 11 year old thriving and loving life when she was stricken with a medical mystery. Alex's symptoms progressed where she became completely paralyzed and dependent on a ventilator. Alex fought hard and wanted to live. It was misunderstood that even though Alex was paralyzed she didn't comprehend or understand anything. However, she very much understood and could communicate by rolling her eyes. Alex lost control of most everything, but even until the end she understood and could still roll her eyes. In March of 2010, her mom, Lori, and doctors found out Alex had a raremutation in a gene called FUS on chromosome 16 that caused her specific case of ALS.
Alex died 6 years after her battle began, at the age of 17 years old on Valentine's Day 2011.
And then, there was my friend, Donnie Abbott.
Donnie had been diagnosed with ALS, or Lou Gherig's disease, in November, 2009. Last June, I got to meet Donnie's wife Sandra at the 2011 ALS-TDI Tri State Trek in Greenwich, CT. Donnie couldn't make the flight from Tennessee, so I told Sandra to please give Donnie a hug when she returned home from me to him. She did.
I then Spoke to Donnie before the 2011 MDA Telethon in September of last year. His voice was beginning to go, but he talked of his deep conviction in God and how that would help him on his journey towards an almost certain unfair conclusion. He thanked ME for all the work I do on behalf of people with muscular dystrophy.
In November, 2011, Don died from complications due to ALS, surrounded on his deathbed by Sandra and his family.
WHERE YOUR MONEY IS GOING:
ALS-TDI, as it's own charity, has given millions to directly help funnel research dollars towards finding a cure for this deadly killer.
According to the Charity Navigator evaluation of ALS-TDI, 82.3 cents of every dollar goes directly to research for causes and treatments of the disease.
ALS TDI is a proud partner of MDA in the effort to develop effective treatments for ALS patients today. In 2007, ALS TDI, MDA and its Augie's Quest initiative launched a historic fundraising partnership which brought $18 million to our lab over the last three years. In addition to funding ALS TDI, MDA has been instrumental partners in the development and execution of our research program, including working with us to gain access to and set up relationships with several clinics around the country through which we collect samples for analysis. The MDA is a key partner in our efforts and share our focus on delivering on our mission: effective treatments that slow and stop this horrific disease.
PLEASE GIVE WHATEVER YOU CAN. THANK YOU!