"Why I Enrolled in the National ALS Registry."
My name is Billy Dyle and I live in Picayune, Mississippi. I was diagnosed with ALS in 2005. I have a wife and two beautiful children. I’m 51 years old.
Last week, I was given a tremendous opportunity to participate in a research project that may tell me why I got ALS. It may lead to a treatment. In fact, it may lead to a cure and even a way to prevent the disease. I jumped at the chance, figuratively speaking of course because I’m in a power wheelchair and no longer can jump. But you know what I mean.
I tell you this because I want to ask you whether you have enrolled in the National ALS Registry – that’s the research project I’m referring to. I enrolled, last week at www.cdc.gov/als. I am one of just over 1,000 PALS who have enrolled. Just 1,000! Do any of us really believe that there are only 1,000 people with this disease in the United States? Of course not! But if PALS do not enroll in the Registry, they will not be counted and ALS will be just one of countless other diseases nobody has heard about.
If you enroll in the Registry, we may get answers to the questions many of us asked when we were first diagnosed…
- What causes ALS?
- Who gets it?
- Where do they live?
- Why me?
- How do we treat ALS?
- How do we stop it?
The National ALS Registry may answer these and many other questions that have gone unanswered since ALS was first discovered more than 130 years ago. In fact, it may become the single largest ALS research project ever created. But it’s up to us - people with ALS - to make that happen.
So please join the Registry and be counted! Participate in the fight to find the cause, treatment and cure for our disease, ALS.