Please support H.R. 2408, the "Scleroderma Research and Awareness Act"

Miscellaneous and Personal Stuff I Must Share
1

I am posting this to ask you to support a bill recently introduced on the floor of the U.S. House of Representatives. I have received permission from TubaDiva to seek your support and hopefully mobilize the Teeming Millions to contact your Congressional representatives and urge them to support the passage of this desperately needed funding.

As some of you may know, my wife is disabled with an auto-immune disorder called scleroderma. Scleroderma is a devastating disease that affects 300,000 Americans, 80% of whom are women. This terrible affliction causes the body to over-produce collagen, and can result in hardening of the skin, fibrosis of the lungs, gastrointestinal dysfunction, and kidney failure. It can cause chronic pain, and often disfigures patients. 50% of those diagnosed with the systemic variety will die within 5 years; currently, there is no cure.

On Friday, May 15, a bill was introduced on the floor of the U.S. House of Representatives to provide federal funding supporting research for a cure for this disease. H.R. 2408, the “Scleroderma Research and Awareness Act”, will direct the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma. The legislation authorizes $25 million in FY10, $30 million in FY11, and $35 million in FY12 for this purpose.

This funding is desperately needed, as the pharmaceutical companies will not commit big research dollars to this killer because there are not enough patients to make a profit. The Scleroderma Foundation, while dedicated, is able to raise only $1 million per year for research.

I am asking you to contact your congressional representative, and urge them to add their names to the list of co-sponsors of this bill, and to urge the House Committee on Energy & Commerce (where it has been referred) to send this bill to the floor of Congress for a vote.

Thanks to TubaDiva and the TPTB for allowing me to make this call to action. It may seem like a small thing to others, but when small things are all we get (in fighting this disease), they are mean a great deal.

Your action in support of this bill is greatly appreciated.

Thank You,
Fear Itself

2

I’m afraid, being Norwegian, I don’t have any clout in this fight. But I wish you the best of luck!

3

Just posting to point out that there’s actually some good progress being made in this field. I’ve heard some very interesting presentations this year about cutting-edge scleroderma research that has really excited the people working on it. They’re understanding more and more about the underlying pathways that cause it.

4

I would be interested in any articles you can point me to. We are always on the look out for new developments.

5

Here’s an article about what I’ve heard. Essentially, microarray studies have shown that you can subdivide scleroderma patients into several clear groups, with distinct molecular phenotypes. Each group seems to have a different cause (or causes), which opens the door to treatments that are much better targeted to the actual cause of each type. Instead of saying, “Oh, you have scleroderma, let’s try this and this and this,” doctors will be able to say “you have this type of scleroderma, so this treatment is likely to work for you.” It also allows for work examining how and why the different underlying causes can lead to the same disease, which should provide some interesting insights.