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. 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 at the NIH is key to making much-needed progress in treatments and, hopefully, a cure for ichthyosis. In the past, increases in the NIH budget have led to great advances in genetic research for some of the ichthyoses. Unfortunately, the recent sequestration has caused a major delay in progress and there is still so much work to be done. Under sequestration and the current budget caps, NIH funding was cut by $1.7 billion in 2013 and funding in 2014 remained flat. This lack of funding is causing many researchers to leave the field, while existing investigative labs are struggling to operate or recuperate from the loss.
[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, so that people like me can have hope that someday a cure will found.
Thank you for your consideration.