I was thinking today (I know that is hard for some to fathom) about the key things that happened to the people with ALS in 2008.
"Time" and "Newsweek" magazines both carried significant stories about ALS. Remember ALS is considered an orphan disease because so few of us get it. I don't necessarily agree with that, but I will let them say it. "Time" ran a story about how they are using stem cell research from people's skin, and trying to understand how ALS works. I think that is significant. If they can figure out how it works, what it does...they might be able to cure it. My hope and dream. At least one of them.
The VA announced on September 23 that ALS is now a service connected disease. That opens up the door to all the VA has to offer, which is very significant. Now to get through the red tape and paperwork the VA makes you fill out before getting benefits.
And finally Congress passed the ALS Registry act. What this does is gets everyone with ALS on a roll,and that way their is one central data point for them to collect information from the PALS.
I am thankful for all that. There is more to be done. But I am thankful......
Carlsbad Marathon Roll For a Cure Jan 25, 2009
The Cook Men at Thanksgiving
ALS Team Walk At Mission Bay October, 2008
My Pogi Sons
The family
Rod, Chuck and Steve in Millington Tennessee August 2008
Chuck and Atring
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment