Local resident continues fight against A.L.S.

Published 12:00 am Friday, June 8, 2007

When I walked into the conference room that was all too familiar, much to my surprise, there was standing room only. It immediately took me back to a time just a few years ago when the girls (D.J., 10, and Abbi, 12) and I came to Washington, D. C. to attend our first A.L.S. Advocacy Day Conference.

There were only about 30 states represented and maybe 350 or 400 people there.

Andy, my husband, was diagnosed with A.L.S. in October 2002. While he was in Mexico getting a non-F.D.A. approved, $30,000 snake oil cure, the girls and I set out to make a difference. The three of us were the only people there from Alabama.

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At that time, Alabama did not have an A.L.S. Chapter, so we were pretty much on our own. We had brought with us more than 3, 000 signed letters for our senators and congressmen.

I did not think that was a big deal until one by one, each state stood up and introduced themselves and told their accomplishments throughout the year. No one even came close to the number of signed letters that we had and we had only had two months to gather signatures.

New York City brought only 600 letters for their representatives. I thought, “are you kidding me?” (Maybe not those exact words). New York City alone has about 8 million people and they could only muster up 600 signatures???

At first, I was confused .

Then I began to realize how blessed I was. Blessed to have a Mom who wrote many letters to the newspaper asking people to come out and sign letters wherever we might set up our tables.

Blessed to have sisters that worked tirelessly at the Flea Market, Wal-Mart, Cross Roads Exxon and anywhere else that they would let us set a table up.

Blessed to have not just one, but two church families that helped in any way that they could to get letters signed and so blessed to live in a wonderful, close-knit community called Selma, Ala.

As a teenager, I could not wait to get out of this one-horse town and I did move away for awhile, but fate brought me back to Selma in 1995. And now, as an adult, I realize that there is no better place to live. Nowhere else would people be so kind and compassionate. People that I did not even know dropped signed letters on my doorstep.

I guess I knew that we, (Selma), had done well when the vice president of government relations for the A.L.S. Association had me stand up while he announced to everyone that “single handedly” I had brought more than 3,000 letters for the Alabama senators and congressmen.

The thing that Steve Gibson did not know, and what he could not understand was the loving kindness of my “one-horse town.”

Needless to say, Sen. Shelby, Sen. Sessions and Congressman Davis were blown away by the stacks of letters from their constituents.

Andy passed away on New Year’s Eve of 2004. A.L.S. finally won, or I would like to think, Andy finally won. He won his place in Heaven with his Lord and Savior, Jesus Christ. What an inspiration and blessing he was to everyone who knew him.

I have not missed a year going to Washington, D.C., nor I do not plan on missing a year until someone finds a cure for A.L.S.

When I walked into that conference room and saw so many people, it was bittersweet. I was so proud that all 50 states were represented, even Hawaii and Alaska.

There were more than 1,000 people in that conference room.

It was sad, as well, because more people there meant there were more people dying of this devastating disease.

I let my gaze scan the room. It was a virtual sea of dying faces and their loved ones, caregivers, families and those, like me, who had lost a loved one to A.L.S.

There must be hundreds or thousands of people with A.L.S. who do not even know about this week-long conference and that this one day of the year, so many strong, very brave and very sad people, storm our nation’s Capitol.

To be here is so surreal. To hear all the stories, like the 31-year-old, normally healthy man whose wife gave birth to their first child, a baby girl, and then, three months later found that he was dying.

And then, there are the stories of the people who find out they are dying of this horrific disease and they have no health insurance. They spend their life savings and sometimes have to sell their homes just to stay alive for the next two years.

There are those who have lost 10,12 or even 15 family members to A.L.S. You see, there are two kinds of A.L.S. There is familial, which is hereditary, and this makes up about 10 percent of all A.L.S. patients. Then there is sporadic, which is the kind of A.L.S. that strikes anyone at anytime. This makes up the other 90 percent of A.L.S. cases.

Oh, there are as many theories as there are scientists. However, every scientist

concludes his research with, “this is just a theory or my best guess,” because there is no national A.L.S. registry.

No national data base that doctors and scientists can go to and compare notes. So, Dr. “A” in Oregon has no idea what Dr. “X” is doing in Florida and scientist “X” has no idea of the research that scientist “Y” is doing.

We have no real data on how many people have A.L.S. and where they live. Are there clusters of people in certain areas? We cannot know these things without an A.L.S. registry.

This registry can only be put into place by Congress passing a bill to start the registry, so that we are able to compare notes, and who knows, some doctor, somewhere might be trying some unconventional methods that might actually work on his patients.

Well guess again, it is not that easy. It must, first, be proposed by a member of Congress that we, the advocates, come and beg each senator and congressman to co-sponsor this proposal, then it goes before the Senate for a vote and then the House for a vote.

But, if we do not have enough bi-partisan co-sponsors, the bill will go nowhere.

Government employees, who I pay with my tax dollars, are pushing good ideas away because of some petty partisanship or bruised egos. Meanwhile, real people are dying. Husbands are having to bury their wives, children are being left fatherless, wives are becoming widows, etc. A.L.S. has no boundaries. It affects every race, sex, ethnicity, and yes, even partisanship.

On Wednesday, May 17, 2007, eight of us from Alabama had appointments with all nine of Alabama’s representatives. We all gathered in the hotel lobby while buses shuttled each group to the Hill.

More than 1,000 A.L.S. advocates and patients went to Capitol Hill to ask for two things, the passing of the A.L.S.

Registry Act and more funding for research from within the Department of Defense.

The reason for this is because four independent studies have shown that people who have been in the military, from World War II to the present, are twice as likely to contract A.L.S. as those who have never served in the military.

As it stands right now, scientists believe two people in every 100,000 will get A.L.S. Four in every 100,000 will be in the military. This means that there are, at least, 350 people with A.L.S. in the state of Alabama.

These numbers are just best guesses because, again, there is no national data base to gather information. “All” of you should feel free to write your own letter to Sen. Shelby, Sen. Sessions and Congressman Davis, telling them that you would like for them to co-sponsor the A.L.S. Registry Act. After all, they told me that they love to hear from their constituents.

One last thing, on Wednesday morning as I was waiting for the shuttle buses to take us to the Hill, a man, maybe 45 years old, wheeled up to me in an electric wheelchair. He had pictures of his two little boys scotch-taped to the front of his chair. I could tell that his body was failing him and his voice was barely audible.

He struggled to get the words to come. He looked up at me with tears in his eyes and his bottom lip quivering. “Are you Tracye?” he asked. I said, “Why, yes I am.” He said, “Steve Gibson told me that your husband passed away a few years ago and I want to thank you for still coming here to fight for me.” Tears were streaming down his face and mine. I knelt down to hug him.

He was not done. He said, “Steve also told me that you and your daughters brought more than 3,000 signed letters a few years ago and that this year, you raised almost $4,000 at your Walk. Please tell the people in your town, ‘thank you’ for their help.” About that time, his wife walked up and said, “Are you making people cry again?” And she smiled the sweetest smile that I have ever seen.

He looked up at me, through his tears, and said, “See how blessed I am. Isn’t she beautiful?” Here was a man who had every reason to be angry at God or consumed with self-pity and he was telling me how blessed he was. I never even knew his name, but from a blessed man, dying of A.L.S., “Thanks, Selma.”

Thanks to Gray’s Furniture, Cahaba Furniture, Screenco, Elkdale Baptist Church and all the people of Selma who gave their time and money to fight this terrible disease. And a special thanks to my family for their support.

Tracye Howe-Murphy is a resident of Selma.