Protect Vision Research Funding
Advocacy
Foundation News
Join us in the movement to protect vision research funding by reaching out to your members of Congress.
Recently, at the urging of the White House Office of Management and Budget (OMB), the White House reportedly began drafting an executive order that would create a commission of political appointees with the power to approve or reject National Institutes of Health (NIH) grants, including grants from the National Eye Institute (NEI). After pushback from Congress, reports suggest the White House has stepped back, for now. But this was not the first attempt to put political appointees in charge of research funding.
NIH funds vision research through the NEI, the nation’s leading public funder of research on eye disease. For more than 50 years, the Foundation Fighting Blindness has worked alongside NEI, academic researchers, and industry to advance treatments for retinitis pigmentosa, Stargardt disease, Usher syndrome, macular degeneration, and other retinal diseases. As the leading private funder of retinal disease research, the Foundation has invested nearly $1 billion in the investigators, natural history studies, patient registry, genetic testing, and clinical infrastructure that make trials possible.
LUXTURNA®, the first FDA-approved gene therapy for an inherited retinal disease, shows how these investments build on each other. NEI scientists helped uncover the role of the RPE65 gene in vision. The Foundation funded early gene therapy studies that restored vision in dogs with RPE65 mutations. Academic teams, supported by federal and philanthropic funding, carried that work into human trials, and industry brought it to FDA approval in 2017. It took decades, and it took every partner. Today, that same partnership supports dozens of clinical trials our community is counting on.
OMB has also proposed a rule that would require political appointees to sign off on federal research grants before they are awarded, reduce expert peer review to an advisory role, and allow active grants to be canceled at any time. Congress has blocked that rule, but only until December 11, when current government funding expires. Unless Congress acts again, OMB could move forward after that date.
NIH decides which research to fund through rigorous, independent peer review by scientific experts. Sustained uncertainty in federal funding can make it harder for labs to keep their staff and momentum, and over time it could cause promising programs to stall before reaching the clinic, lead young scientists to leave the field, and delay treatments for patients. Because the Foundation’s investments and federal investments depend on each other, disrupting one puts the whole pipeline at risk.
The Foundation strongly supports robust federal investment in vision research and the scientific peer-review process, because we know firsthand how that investment works alongside our own to move discoveries toward patients. Funding decisions should be guided by rigorous scientific review and patient need. Please ask your members of Congress to make clear that political review of NIH grants is not acceptable, whether it comes through an executive order, a rule, or any other means, and to keep OMB’s proposed rule blocked beyond December 11.
Please contact your Representative and both of your Senators today. It takes less than five minutes.
- Find your Representative – enter your ZIP code for their website, contact form, and phone number.
- Find your Senators – choose your state for each Senator's phone number and contact form.
Or call the U.S. Capitol Switchboard at (202) 224-3121 and ask for your Representative's or Senator's office.
A short phone script and sample email copy are linked below. Please consider adding a sentence or two about why vision research matters to you or your family.
Thank you for supporting the research that brings us closer to treatments and cures.
