Advocacy in Action: More Funding for FSGS Research! June 16, 2015 by Chelsey Fix Remember When… Back in January, FSGS was officially added to the list of conditions eligible for research funding through the Department of Defense’s 2015 Peer Reviewed Medical Research Program (PRMRP). This opened up a new $247.5 million funding source for FSGS researchers. When NKI and our patient families visited Washington DC earlier this year, we advocated to keep FSGS on the list and to increase the funding available for research. More Good News: Last week, the Senate Appropriations Committee approved the 2016 Defense Appropriations budget including $31.2 million in additional funding for the Peer Reviewed Medical Research Program. FSGS made the list of eligible conditions again, so if the bill passes without changes, our researchers will have access to $278.7 million in 2016! What’s Next? The bill will have to be passed by the House and Senate and signed by the President before going into effect. We’ll be tracking it and keeping you updated as it moves through the legislative process. Thank You! Increased funding for research and including FSGS on the list of eligible DOD conditions were two of our “Asks” when we visited Capitol Hill. Thank you advocating in person, writing letters and emails, and making phone calls to increase government awareness of Nephrotic Syndrome diseases and the vital role that government funding plays in finding better treatments and cures! Keep it up and stay tuned for more opportunities to be an Advocate!
antonio says June 16, 2015 at 10:49 pm Hi i have been liveing with fsgs for like 10 years now and im not afraid to spread the word about the disease and how it can impact your life. I want to do all i can to help people understand fsgs becouse i have been threw a lot dealing with kidney failure i have had a bunch of surgeries i coded out and now i am on dialysis But i am steal in high spirit and i want to help people. So anything i can do to help call me at (276)650-2140