July 29, 2007
Legislation to create national registry for ALS


Bobby, who is featured in the article I've linked to above, emailed me and asked me to help raise awareness for a cure for ALS (Lou Gehrig's disease) as well as of legislation that " the U.S. Congress has an opportunity to help our nation make progress in the fight against Lou Gehrig’s Disease by passing legislation to create a nationwide ALS (Amyotrophic Lateral Sclerosis) registry, which would help identify the incidence and prevalence of this illness in the United States and collect important data needed to help find a cure." (Via citizen-times.com)

According to the article:

"- ALS, a neuro-degenerative disease, usually strikes people between the ages of 40 and 70.

- Based on loose studies, a little over 5,600 people in the U.S. are diagnosed with the disease each year.

- Once thought rare, it is, in fact, quite common. There are nearly 120,000 cases diagnosed worldwide each year.

- Five to 10 percent of cases occur in families where the disease has already been detected, but the vast majority arises spontaneously among previously healthy adults.

- Most people who are in the late stages of ALS can see and hear but are unable to communicate or move.

- The disease eventually robs them of their ability to move their muscles, breathe on their own, speak or even wink and eye."
{Source: www.alscounts.com/livingpatients.html}

Bobby, who was diagnosed fourteen years ago, was told he had three to five years to live. And how is he spending his time- raising awareness for a cure and to get this legislation passed.

He also recently went skydiving and tried NASCAR racing out, spending time with his loved ones, friends and family and enjoying his life.


Click above to read more about Bobby and find out how you can help support this bill - and his life's work.

[visual description: Bobby, who is sitting in a power chair, is shown in front of a red NASCAR race car near a track.]

{visual description: Bobby is shown in the air during a tandem skydive with an instructor who is giving a thumbs up.]
Labels: legislation

http://wheeliecatholic.blogspot.com/...-registry.html