Scleroderma Advocacy

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!

Products to keep you warm

It’s starting to get COLD in chicago, and I mean 20s and 30s, REALLY COLD (especially for those of us who have raynaud’s even when opening the refrigerator!) I thought I would post some of my favorite products to keep you warm.

1. Smartwool socks. These socks are lightweight and non-itchy and come in all kinds of neat patterns. (See these.) You can buy them through the company’s site, or other outlets such as REI. There are also other products such as hats and scarves made of the same material.
2. Handwarmers. I love these handwarmers by Grabbers. You can put them in your shoes or carry them in your pocket. I buy a big box at Costco at the start of the winter and use it up by the time it’s spring.
3. The Vermont Country Store has a lot of products designed for the cold winter days in Vermont.  This year I bought the mittens which look cozy and warm and some tights made of wool which come in lots of nice colors.  Maybe someone with scleroderma can wear a skirt in the winter in Chicago! I will have to keep you updated.

Welcome to my blog!

I hope to write about living with scleroderma, my experiences as a young woman living with a chronic disease. I plan on gathering information from a variety of sources to make living with scleroderma easier.