ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, May 6, 2009

The More Things Stay The Same, The More They Stay The Same

Following was written in the DesMoines Register two years ago, but Rekha Basu's words ring as true today as they did then.
Published May 18, 2007
ALS activists fight for research, cling to hope
By REKHA BASU
REGISTER COLUMNIST

If you've ever toured the landmarks of Washington D.C., you know what an awe-inspiring experience it can be. With the memorial monuments and Capitol Hill as backdrops, anything seems possible - the victory of freedom and democracy over dictatorship, hope over despair.

But every May, one contingent makes a pilgrimage to the capital desperately seeking something that is not yet possible, in an age of space exploration, information super-highways and smart bombs: a cure for a fatal illness leading certainly to disability and death.

May is ALS Awareness Month. ALS is shorthand for Amyotrophic Lateral Sclerosis, the degenerative disease that claims nearly all the physical but not mental abilities of an estimated 30,000 people, on its way to ending their lives.Sixty-eight years after Yankees first baseman Lou Gehrig's diagnosis gave the illness its more common name, and 42 years after Iowan Henry A. Wallace died from it, a cure is nowhere on the horizon. Neither is any meaningful treatment. There isn't even a workable theory about what causes some people's susceptibility to the death of motor neurons that control speech, movement and breathing, leaving them prisoners in their own bodies.

Every May, the ALS Association brings together ALS patients from around the country and their families. They light candles at vigils, get briefings on the latest science and fan out to meet legislators to ask for more research.This isn't like lobbying for passage of a farm bill or a banking regulation. It's about life and death.

Underlying the determination is a palpable sense of desperation.This year's gathering was on Monday and Tuesday and was attended by more than 600 people. Iowa played a special role. It was the first year of the new Henry A. Wallace Public Service Research Award, named after the former vice president to Franklin Roosevelt, agriculture secretary and co-founder of Pioneer Hi-Bred. It honors a public official's efforts to promote ALS research toward treatment and a cure. It went to Iowa's senator, Tom Harkin, for his support of federal research and funding for ALS, including his sponsorship in April of an embryonic stem-cell research bill. Researchers say that may hold the key to finding a cure. The bill passed but was vetoed by President Bush.The award was presented Tuesday night by a Pioneer-DuPont vice president, Erik Fyrwald, and me. Last year, the ALS Association gave its Voice of Courage award to my late husband, Rob Borsellino, who at the time was dying from ALS and couldn't be there. Harkin accepted it on his behalf.Tuesday, Harkin told the audience the bill is one vote short of enough votes to override another presidential veto. He called on attendees to vigorously lobby for passage.There were several Iowans in the audience planning to do just that. Sue Lawler came from Mitchellville with her son and her mother on behalf of Sue's brother, 40-year-old Dave Johnston, who was diagnosed last April. Lawler said she's taken on the role of researcher because her brother and his wife are so busy with the challenges of daily living. Being there, Lawler said, was "a chance to make a difference with a disease that you have no chance with."She had been there for the candlelight vigil at the World War II Memorial Monday night, where I was one of three speakers. She had felt the camaraderie and resoluteness. But by the end of Day Two, after hearing about the agonizingly slow process of research, reality was sinking in. "Yesterday was more of a high," she said, "Today was a lot harder because you hear there are no real advances."Terry Fuller of Bettendorf has come every year since her husband's death from ALS in 2002. "At first I thought I was coming for him, but then I realized I was coming for myself," she said. She just needs to understand why he died.

From the stage in the majestic Carnegie Library Tuesday night, I looked out on a crowd dotted with wheelchairs and walkers and ventilators, and the family members who attended to their loved ones, caring and resolute, weary and scared.Against the grandeur of the setting and the festivities, I saw people clinging to hope knowing full well there is little reason for any in the immediate future. From that view, the "anything's possible" promise of Washington felt like too long term a prospect.

2 comments:

  1. "Against the grandeur of the setting and the festivities, I saw people clinging to hope knowing full well there is little reason for any in the immediate future. From that view, the "anything's possible" promise of Washington felt like too long term a prospect."

    Been there. Felt that.

    ReplyDelete
  2. Tom Harkin supported federal research and funding for ALS, including his sponsorship in April, 2006 of an embryonic stem-cell research bill. Researchers say that may hold the key to finding a cure. The bill passed but was vetoed by President Bush.

    ReplyDelete