Much Progress, Further to Go
The quest for treatments and a cure for FOP is incredibly active and there have been exciting developments on many fronts. Despite the rarity of the disease FOP is being studied intensively by laboratories across the country and around the world.
Much of this scientific interest has been driven by the 2006 discovery at UPenn of the gene that causes FOP. Knowing the genetic basis for the condition has opened many doors for targeted research and the potential for real progress on treatments and even a cure. The incentives are there and dedicated scientists have answered the call; yet research is costly and government support for rare disease is limited.
Funding is desperately needed to enable the most promising research and get us to effective medicine for Sona and her friends!
How We Fund Research
Since Sona’s diagnosis we’ve worked for a way to fund research that will have the best chance of impacting her condition. In 2015 we established the FOP Competitive Research Grant (CRG) program through the IFOPA, the International FOP Association. The CRG provides a structure for finding the most promising applied research and accelerating progress. Proposals are solicited from the worldwide FOP research community and go through an extensive peer review process with a Scientific Advisory Board (SAB) of highly-qualified scientists and clinicians. Based on the SAB's recommendations we fund the projects that have the highest potential for near-term therapeutic impact.
The first three outstanding research projects funded by the CRG have been announced! Read more about the CRG here
More funding means more incredibly important projects like these can be supported next year!
Why Funding Is Needed Now
With the progress on FOP that's been made in the last decade effective treatments are tantalizingly close. Yet the "last mile" is the hardest in the race. That's why it's so important to fund highly-targeted research at this critical time.
For Sona, every day that goes by without a treatment means the disease continues its terrible progression, sometimes slowly, sometimes quickly. Every day we get closer to a treatment means Sona is less likely to face a life imprisoned by her own bones.
Every day and every dollar counts. Please help us fund crucial research on FOP!