[date]
[Your address]
[Address of Congressman/Senator]
Dear Senator, Congressman [place in the name]
Please take action to insure a funding commitment beyond 2011 for the NIDDK’s Gastroparesis Clinical Research Consortium (GpCRC)!
I suffer from a digestive disease called gastroparesis. [Personalize to your story—perhaps you are writing on behalf of a loved one]
Over the years, people living with gastroparesis have had little to cheer about—in fact, over the past decade, access to drugs that were the mainstay of treatment has been drastically curtailed and nothing new has been brought forward to replace them.
Gastroparesis, in its worst form, represents stomach organ failure. Eighty percent of those affected are young to middle-aged women!
Through the years, so little has been spent on research for my digestive disease that I feel as if my illness does not matter. Really! How else can you explain the legions of women, men and children—five million—who suffer without a single medication yet developed exclusively for this illness? Nausea, vomiting and abdominal pain are terrible and debilitating symptoms; yet gastroparetic sufferers must endure them daily.
It has taken until 2005, with the establishment of the GpCRC, to begin gathering what is in place for so many other diseases whether rare or common, that is, the basic elements needed to develop effective treatments. Such elements include data on how many people suffer and what are their characteristics, the gathering of tissue samples for study, and the development of validated tools in order to conduct clinical trials, etc. The consortium has only just begun to tackle this monumental amount of fundamental tasks.
The ability to find effective treatments and improve the lives of people living with gastroparesis rests with research. I am worried the good work which is underway by the NIDDK’s Gastroparesis Clinical Research Consortium (GpCRC) will come to a halt after 2011. The GPCRC needs a firm commitment for funding beyond 2011 in order to make critical headway towards meaningful treatments. Steps need to be taken now to insure secured funding for 2011.
My disease does not have the representation of paid lobbyists, the high profile of a celebrity sufferer, the benefactor of a Bill Gates, nor is it a visible disability—this may explain why it has taken so long to get a concerted effort going on behalf of my digestive disease. It is vital to keep the GpCRC going to help advance answers and hope for people and families living with gastroparesis.
I wait to hear back from you as to what steps you will take to ensure the continuation of the NIDDK’s GpCRC program. Thank you in advance for your attention to my request.
Sincerely,
[your name]