Founded in 1981Educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy, and research funding for better treatments and eventual cures.
The Honorable ____________________________
House (or Senate) Office Building
Washington, DC 20515 (20510)
Dear Congressman/Senator ______________:
As a constituent who votes, I am writing about an issue that is very important to me: medical research funding. Specifically, I am writing to urge you to support an increase in funding for the National Institutes of Health (NIH) during fiscal year 20__.
I [my child, my friend, etc] have a rare skin disease called ichthyosis. Research at the NIH is key to making much needed progress in treatments and, hopefully, a cure for ichthyosis.
Ichthyosis is a family of genetic skin diseases characterized by severely dry, thickened, scaling skin. Symptoms of ichthyosis range widely depending on the variety of ichthyosis involved. My ichthyosis is [personalize]. As you can imagine, life with this disorder comes with many physical and social complications.
Research on the genetics of ichthyosis and improved treatments is vitally needed. In the past, increases in the NIH budget led to great advances in genetic research for some types of ichthyosis. However, the recent "sequester," causing decrease in government funding, have implemented a major delay in progress, when there is still much work to be done. Under sequestration and the curren budget caps, the NIH was cut by $1.7 billion this year. Funding for research is scheduled to face anothr round of cuts in FY14 and beyond.
[personalize with a few sentences]
Investing in research at NIH will lead to better treatments and better lives for patients living with rare diseases like ichthyosis. Please support an increase in NIH funding, or at the very least, please stop the decreases in the coming fiscal year.
Thank you for your consideration.