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Rep Tierney (D-MA) introduced H. Res 1232 on May 22, 2008 supporting the idea of a National Scleroderma Month. The Scleroderma Foundation’s advocacy committee has been working to secure more co-sponsors for this legislation, and you can help this effort. With 50 co-sponsors, the bill does not need to go to committee and can be passed more quickly, and there are currently 20 co-sponsors.
You can figure out who your congressperson is, and how to contact them, by clicking here and entering your state and zip code. You will be given a contact phone number. All you have to do then is call that number and ask to speak to the Health Affairs Legislative Aide and tell them you would like to request your congressperson become a co-sponsor of H. Res 1232. Leave a message with contact information if you can’t get through.
Become an Scleroderma Foundation advocate today by clicking here and filling out the online form. You will receive “action alerts” periodically prompting you to contact your legislators about specific issues of importance to the scleroderma community.
The bill currently has 20 co-sponsors, and I’m proud to say both of the legislators that I contacted (Bobby Rush and Danny Davis, from Illinois) signed on. Here is the complete list so far:
Rep. Tammy Baldwin [D-WI]
Del. Madeleine Bordallo [D-GU]
Rep. Lois Capps [D-CA]
Rep. Michael Capuano [D-MA]
Rep. Steve Cohen [D-TN]
Rep. Danny Davis [D-IL]
Rep. Maurice Hinchey [D-NY]
Rep. William Jefferson [D-LA]
Rep. Patrick Kennedy [D-RI]
Rep. Dennis Kucinich [D-OH]
Rep. John Lewis [D-GA]
Rep. Edward Markey [D-MA]
Rep. James McGovern [D-MA]
Rep. Gregory Meeks [D-NY]
Rep. Bobby Rush [D-IL]
Rep. Linda Sánchez [D-CA]
Rep. Janice Schakowsky [D-IL]
Rep. Robert Scott [D-VA]
Rep. Christopher Shays [R-CT]
Rep. Christopher Smith [R-NJ]
If your representative is not on the list, please make a phone call today! You’ll be surprised how easy it is to make a difference.
The Greater Chicago Chapter of The Scleroderma Foundation is having their annual walk in Highland Park this Sunday, June 22. Registration begins at 7:30, and the walk begins at 9am. You can walk either 1 or 3 miles. It is a great opportunity to meet lots of nice people who have the disease or s
More information about the walk, and directions, are here.
Register online here.
Donate to my walk here.
I can’t believe it’s been over a month since I last posted! I am hoping tomake it into more of a routine, but it seems like there is always something else that needs to be done first– dinner, bathing Liam, seeing a patient, paying a bill. This winter has been very hard on those of us with scleroderma– my friends with the disease have been mostly homebound and many are depressed. Yesterday it was finally 60 deg (yeah!) here in Chicago! I have been in the Treatment Room at La Rabida, a chronic children’s hospital, for a month now, and I seem to have gotten every virus that the kids are bringing here. It’s been a bad flu season here because the flu vaccine didn’t cover the flu virus very well.
Yesterday there was congressional testimony by a scleroderma patient from Los Angeles named Cynthia. (See this link.) She is 13 years old and her congresswoman, Linda Sanchez, was instrumental in pushing the request for congessional testimony. Another woman with scleroderma who also had a bone marrow transplant also testified. Although I recorded CSPAN all day I didn’t catch the testimony on tape, unfortunately. This is great exposure for scleroderma!
A group of us from the National Scleroderma Foundation met in Washington DC. It was a very busy time of the year, so many of the senators and representatives that we tried to meet with were too busy to meet with us, but we met with their healthcare aides. I did get to meet and have a photo-up with Jesse Jackson Jr. from Chicago. We also met with NIAMS director Dr. Katz. Although funding for scleroderma research has been flat for the last 5 years, he could not promise us increases in funding and told us that as far as he was concerned the best research with the best scores gets funded. That was a bit discouraging, but he did mention that he would like to work with us on a conference about scleroderma that the NIH might host. 
Me with Rep. Jesse Jackson, Jr.
I have become passionate about advocacy for money for increased scleroderma research. I become involved at the state level and have been to Springfield 2 years in a row to educate our legislators about this disease. I was recently invited to join the national advocacy committee and we are traveling to Washington DC on Dec 11-12 to meet with our national senators and representatives. We are also meeting with Dr. Katz who is the director of the NIAMS (National Insitute of Arthritis and Muscloskeletal and Skin Diseases). NIAMS has a very nice informational webpage devoted to scleroderma. The Department of Defense has recently become an alternate funding source for cash-strapped researchers. This year, congress allocated $50 million dollars for 25 specific diseases for research through the Department of Defense and for the first time this year, Scleroderma was included (by itself) as one of those diseases (see DOD wording).
However, Pres. Bush has just vetoed the NIH funding bill that would increase governmental spending for medical research. The amount of money in questions (about $10 billion) is about 1/10th the amount allocated to the war in Iraq!
I will keep you updated about the results of our meeting with Dr. Katz and our “Mini Capitol Hill Day” in December. If you are interested in Scleroderma Advocacy, please contact me!
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