A few months ago Rob & I joined a group lobbying on Capitol Hill for additional funding for Tuberous Sclerosis research. The TS Alliance recently asked for additional help in letting our elected officials know the importance of supporting appropriations to the Tuberous Sclerosis Complex Research Program (TSCRP) within the Department of Defense Congressionally Directed Medical Research Program. My mom wrote a heartfelt letter and sent it to all of the representatives in Minnesota. I found it very moving and asked her if I could post it to the blog. Here is what she wrote:
Dear Congressman Oberstar,
Thank you for your support of Tuberous Scerlosis Complex (TSC) that we discussed during your visit to the Finland Recreation Center in March for the St. Urho's Day Celebration.
My grandson, Evan Moss, of Alexandria, VA, was born with this debilitating disorder. Although we are very fortunate that he is mentally high functioning and is not autistic, he has uncontrollable seizures....like 10-20 per day. He is on his sixth medication and it is unlikely that it will control them either. On a recent visit to NYU Hospital, a video EEG recorded over 30 seizures in 2 days......even one is too many. It appears that we are looking toward brain surgery for seizure relief....a scary thought at any age.
Our family and friends have been coping with TSC for almost 4 years and it is emotionally draining for us all and physically draining for my daughter, a Minnesota girl, and her husband. My granddaughter, 5 1/2, not only reports when her brother has a seizure, but also starts counting so that she can also report the length of the seizure.
Since 80% of people with TSC also have autism, perhaps a cure could also unlock some of the mystery of that disease that seems to be affecting our youth in such dramatic numbers.
Please contact your peers in the US House of Representatives Appropriations Committee and ask them to support the $10 million for the Tuberous Sclerosis Complex Research Program (TSCRP). Fully funding the TSCRP is essential to finding a cure for this debilitating disorder. We just need one miracle so that he and many like him can enjoy a healthy life that most of us take for granted.....I don't think one is too much to ask for.
If there is anything that I can do to help you with this cause, please advise.
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3 comments:
Great letter Mabel!! Lisa, your Minnesota rellies are thinking about you guys and following the updates. Hugs all around!!
Karen,
Thanks, it's nice to hear. It looks like things are going to heat up for us over the next few months.
Lisa
Lisa,
It sounds like Evan is in excellent hands. You've assembled a top notch team of experts and you've educated yourselves on every aspect. You're amazing parents and you should be VERY proud of your beautiful children and your devotion to their health and well being. I can't imagine the stress you're under and I know none of us can make that better, so I'll just remind you that we love you all, think of you often and are sending you our very best wishes every day.
Rock on girl!!
Love, Karen
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