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 www.alsa.org
and please encourage our Congress to establish an ALS registry.
Ketchikan, AK - USA
About: About: Ketchikan Resident/daughter of Mel Teal, who had
ALS, Lou Gehrig's Disease
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