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Encourage Congress to establish an ALS registry
By Linda Kreider


May 31, 2006

WellI made it to Capitol Hill, what an experience!

It was with bitter irony that I was there when my father passed away on early Tuesday morning, May 16 only hours earlier I was at the candlelight vigil held at the Lincoln Memorial. I was comforted by all my fellow advocates, including ones that have ALS. I felt so bad that I was crying as they were all going through a very similar situation. ALS has to be one of the most awful diseases there is and knowing that there is NO treatment or cure, makes it even worse.

After talking with my dad's physician and sister, I was not going to be able to get back to Ketchikan in time before his passing as Dr. Pankow did not believe he would make it through the night. Dr. Pankow told me that he and dad talked earlier in the morning and my dad told Dr. Pankow that he did not want me to come back finish up "giving them hell on Capitol Hill". I did not "give 'em hell"; I just went along with the flow with the rest of the advocates.

I learned a lot about ALS without too much information to go from, there is statistics showing ALS is prevalent among women, studies have shown that military persons are very much more likely to contract ALS; it is NOT contagious, there are 2 kinds of ALS, familial and sporadic. ALS has almost quadrupled since the Gulf War. It strikes at ANY age, more common in younger age. I could go on and on. I do plan to attend the next Advocacy Conference in DC next year with my sister, unless it falls on my youngest daughter's high school graduation. My sister who does not fly has promised me that she will go with me. Hhehehe..we shall see!

I was able to with the help of ALS directors, etc to contact physician at the Virginia Mason Hospital in Seattle and cooperation with the Ketchikan Mortuary to get my father's body to a pathologist in Seattle who removed my father's brain and spinal cord. It was then delivered to the Virginia Mason Hospital for research for ALS. This was my dad's wish and it usually takes months of setting this up. Ketchikan does not perform autopsies here and it "was not going to happen" as his body was being shipped out to be cremated. BUT persistence paid off and again, it was because I was invited to come to DC as an advocate for ALS, representing Alaska. I don't think we could have done it by phone! The Ketchikan Mortuary (Roger and Ron) called the pathologist in Seattle and they set up with the Dr. at the Virginia Mason Hospital to receive the brain and spinal cord. Since both my sister-in-law work for Alaska Airlines, we were able to get the fee waived for dad's body to be shipped on dry ice; otherwise his body would have been embalmed to be shipped to Seattle for cremation. It was a crazy day not sure what was going on from one minute to the next and with the 4 hour time difference we were dealing with, I am amazed it happened. The Ketchikan Mortuary told me that this was the first time that this was done and "Linda, you have opened doors for us"; families can get this done there is a cost of course, private autopsies can be as high as $3,000, but it depends on what the scientists/physician's need for their research.

I did meet with Senator Murkowski and she is an outstanding woman. She is one of the sponsors for getting an ALS Registry established. I did meet with Senator Steven's staff and I do believe he will be signing for support of the ALS Registry. I did not get a meeting set up with Rep. Young - not sure if he was around or not.

Please pass this website and please encourage our Congress to establish an ALS registry.

Thanks much,

Linda Kreider
Ketchikan, AK - USA

About: About: Ketchikan Resident/daughter of Mel Teal, who had ALS, Lou Gehrig's Disease



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