ALS Bytes

Dear Friends,

It’s time once again to dust off your walking shoes and join me as a member of my walk team, “Steve’s Striders” in our quest to help find a cure for ALS. The Fayetteville NC Walk to Defeat ALS is one of several walks held throughout the state each year, by the Jim “Catfish” Hunter Chapter of the ALS Association. These walks not only fund research toward finding the cure, they also provide for patient services, equipment loans, grants, support groups and many other needs of the estimated 30,000 families in the US dealing with this devastating terminal disease.

Steve’s Striders 2009

As you may already know, I was given 3 to 5 years to live when diagnosed in 2002, which puts me in the top 10-15% for longevity. Most are not so fortunate, declining faster than the process-of-elimination diagnosis takes. Needle probes are inserted into the muscles of the limbs, neck and tongue, measuring nerve signals from the brain. As the nerve cells die, muscle wastes away leading to complete paralysis of all voluntary muscles (limbs, lungs, neck, not the heart). This is often described as a “glass coffin” because the mind and senses remain intact. Imagine lying in your bed, motionless, as a mosquito appears on your knee, or a gnat flies into your ear, unable to explain to your caregiver what’s wrong.

Some say we’re no closer to the cure than we were back in Lou Gehrig’s day. I believe we’re very close! Every new day brings exciting news of advances in medical science, stem cells, genetics and the effects of toxins on our health. Many theories exist as to a cause of ALS, but it’s definitely an extremely complex puzzle. I also believe it’s very important to point out that the U.S. soldier, sailor, airman and marine are almost twice as likely to get ALS.

While a key component of the cure is certainly awareness, without your participation the cure will remain elusive. Our ailing economy and the outlook for healthcare changes are crippling the efforts of researchers, delaying clinical trials and putting a gridlock on potential drug development. This is where we need your help. I hope you’ll consider joining my team, “Steve’s Striders” as we lace-up to make a difference. Every new team member and dollar contributed gives hope to those of us with this debilitating illness as well as our loved ones. You don’t have to donate or even walk to make a difference; many volunteers are needed on walk day, Saturday, April 10th. If interested in volunteering, please contact me ASAP.

I’m looking forward to hearing from you, and hopefully seeing you on walk day. Be sure to get your t-shirt sizes to me for the new t-shirts being made as I write. Sign-up at http://web.alsa.org/goto/Stevesstriders2010.

Sincere thanks,
Steve White