Visit to Midland and Funding for Scleroderma Research

From left to right:

Ryan Tarrant, Ethie Blackman, Veronica Gleason,

Judy(me) Nancy Adams, Laura Dyas

On Thursday, March 25th, I had the privilege of attending a meeting with Laura Dyas (Executive Director of the Scleroderma Foundation Michigan Chapter) www.scleroderma.org/chapter/michigan, and Mr. Ryan Tarrant who serves on the staff of Michigan Representative Dave Camp (District 4). Also in attendance were 2 ladies who also have scleroderma and were there to share their stories.

One of the purposes of the meeting was to seek Rep. Dave Camp's endorsement/support of a bill that will go before Congress requesting funding and support for Scleroderma research and awareness. In addition the Scleroderma Foundation would like to update their records as to how many persons have been diagnosed with scleroderma. Their current numbers are nearly 20 years old....and to date there are 12 new cases diagnosed weekly ( I believe at the U of M alone....so imagine in other states).

The other purpose was for Dave Camp's staffers to meet persons who are affected by the disease and to hear how it has impacted our lives. Those of us in attendance who have been diagnosed with scleroderma had uniquely different stories. That's how this disease is!!! No two people are alike! Every case is unique and every case poses many different challenges.

Here is a useful fact sheet concerning scleroderma:

http://www.scleroderma.org/chapter/michigan/pdf/2007/FACT%20SHEET%20LOGO%202007%20UPDATE.pdf

I was very thankful I had an opportunity to attend this meeting. Thank you to my sister Linda for going with me! It was an inspiration to hear other women's stories and to know we have an organization like the Scleroderma Foundation working on our behalf to find the causes and cures for this disabling disease.

I left there yesterday with a renewed excitement about what I can do to raise awareness of my illness and how to encourage others to become part of the solution. Those of you who know me well can just imagine the whirlwind of ideas racing through my head!!! One of the visions I can see for future support for research is a benefit concert with all proceeds going to the Michigan Chapter of the Scleroderma Foundation and securing items that may be donated for a silent auction to be held by the Foundation in June.

Coming up this June I will have had my disease for "2" years!! Even though I am faced with challenges on a daily basis, in my heart I want to help in any small way I can to help conquer this illness!! As always......thank you for following our blog and coming alongside us in friendship, love, and prayer support!!!