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APFED Visits Capitol Hill

APFED Visits Capitol Hill

             Senator Richard Shelby (R-AL)
 
In March, APFED President Wendy Book and her 11-year-old son, Ryan, joined by 6-year-old Giles Martin Schanen and his parents, Christine and Giles, met with legislators on Capitol Hill to educate them about daily life with the most common Eosinophilic disease – Eosinophilic Esophagitis.
 
On APFED’s behalf, the group met with and thanked Senators Richard Shelby (R-AL),  and Lindsey Graham (R-SC). These Senators have encouraged the NIH to make research funding of Eosinophilic disorders a higher priority. The group also met with other legislators to educate them about the issues our community faces, such as strict diets, repeated biopsies under anesthesia, limited treatment options, no FDA approved therapies, and other challenges. They asked each of them to educate other legislators as well.                                                                            Senator Lindsey Graham (R-SC)
 
 
6/20 Update
US Senate Appropriations Committee Requests Update for Eos Research Agenda
 
For years, APFED representatives have been on Capitol Hill educating Members of Congress about eosinophilic disorders and the need for increased research funding. Last week, the US Senate Appropriations Committee marked up its FY 2013 NIH budget and included in the bill report the following provision:

"Eosinophil-Associated Disorders.—The Committee is pleased that a NIAID working group is developing a research agenda eosinophilic disorders. The Committee requests an update in the fiscal year 2014 congressional budget justification regarding programmatic initiatives being undertaken based on the working group’s recommendations. In addition to NIAID and NIDDK, the Committee urges NHLBI, NICHD, NIMH, and other relevant Institutes to participate in these efforts. Further, NIH should seek opportunities to collaborate with private sector organizations on this initiative."

Thanks to Senator Graham and Senator Shelby for their continued support of the eos community! 

 

APFED on Capitol Hill,  May 21, 2013. View online album.