Monday, April 21, 2008

Taking a Walk; Saving a Life

This past Saturday Derrol and I headed out into the sunshine to join with hundreds of other people from Central Florida who are determined to find a cure for ALS.

The ALS Association fundraiser Walk to Defeat ALS couldn't have been more fun, although bittersweet. Derrol and I hadn't made a fundraising effort. We saw others who had. One group presented a huge check for $20,000.

T-shirts with photos of ALS victims past and present glowed in the sunshine. One photo we saw quite often was of Kevin Bailey. "Kevin's Warriors" was the inscription under a photo of Kevin in his power chair. Kevin lost his battle after five years this past January. His son and family and friends were all walking and had raised money to support research even though research will no longer help Kevin. Adele's Allies; Walter's Warriors, The Sensational Sorgis, and the simple yet poignant sign on several shirts: "We're Walking for Mike." Adults of all ages, some in wheelchairs, some using walkers, some pushing strollers or leading dogs who also wore t-shirts, all came together at Blue Jacket Park near Winter Park, Florida -- a lovely place to take a walk and defeat a disease.

Derrol and I felt like we were the lucky ones there. Derrol is alive. He still has hope that the research will come in time to save him. He's also fortunate that his form of ALS is slow progressing. Where most people die within six years of diagnosis, his has taken twice that long to weaken him to the point that he just now is beginning to use assistive devices like a bi-pap machine at night to aid breathing and a cane or wheelchair during the day.

There was talk of findings, an Italian study shows particular promise of stopping the disease's progression. Another mentioned stem cells. And then I looked at the face of Kevin Bailey's son and knew how hard he was struggling to be happy over these findings. But instantly it became clear that no matter what happened this day, Kevin was still dead after battling that despicable disease for five years.

In the Goldsmith family we have reason to take heart. Even if the research doesn't help Derrol, it will help other family members. Because ours is a rare form of ALS called Familial Amyotrophic Lateral Sclerosis -- the inherited form. So we didn't just walk for Derrol on Saturday. We took our first steps toward fighting for our sons, grandson, cousins, brothers, and sisters, nieces and nephews.... The family has already lost more than a dozen loved ones to this disease, we don't want to lose any more. The Goldsmith clan also serve as great guinea pigs since we can be studied for clues to why some members develop the disease and others do not. We have all come together to participate in a study conducted by the ALS Clinic at Mayo Clinic in Jacksonville. Together maybe we can give researchers the clues they need to find a treatment, a cure or hey, maybe even a cause.

As I write this Ken Patterson, a former NASA engineer, now full-time ALS victim, is tooling along the highways in his little power chair headed from Orlando to Washington D.C. Once he completes the 21 day journey and arrives in our country's capital, he and a group of dedicated people will speak before Congress, meet with their congressmen, and advocate for funding and legislature to help defeat ALS. Because you see, there is an even greater threat from this disease. It is targeting our military. I'm seeing statistics that site our soldiers returning from Iraq are contracting the disease at a 75 percent higher rate than the general population. We must find a cure.