August recess gives cystic fibrosis advocates across the country a unique opportunity to connect with their elected officials at home and help build the relationships and understanding that drive progress for people with CF. Read on for recent advocacy wins, the latest from Congress and the administration, and opportunities to stay engaged.

Congress is moving into its August recess without finalizing fiscal year (FY) 2027 funding, leaving key decisions about federal research investment unresolved. Both the House and Senate are now moving toward a short-term continuing resolution (CR) that would keep the government funded into December, postponing final negotiations until after the November elections. While this delays a final funding agreement, it also extends the window for advocates to influence the outcome.

The Cystic Fibrosis Foundation continues to urge Congress to provide at least $51.3 billion for the National Institutes of Health (NIH) in FY 2027 to sustain progress in biomedical research and accelerate the development of new treatments and cures. While the House Appropriations Committee approved a bill that includes $48.8 billion for the NIH — below the level supported by the Foundation and the broader research community — negotiations are far from over.

On June 25, more than 130 advocates helped build momentum by participating in the Foundation's 18th annual Teen Advocacy Day, including more than two dozen teens living with CF who joined virtually. During more than 120 meetings with congressional offices, teens urged lawmakers to support robust NIH funding, while advocates across all 50 states amplified their message through the Foundation's Online Day of Action, sending more than 6,400 messages to Congress.

As members of Congress return home for August recess, it presents one of the best opportunities of the year for constituents to meet with them to reinforce why strong NIH funding matters and why Congress should prioritize biomedical research as it completes its work on FY 2027 appropriations.

Add your voice by contacting Congress or connecting with your local Advocacy Chair to join August recess efforts.

The Cystic Fibrosis Foundation recently submitted comments opposing a proposed rule from the Office of Management and Budget (OMB) that would make sweeping changes to how federal research grants are awarded and managed, including at the National Institutes of Health.

The proposal would give political appointees greater authority to review and potentially override grant funding decisions, undermining the long-standing peer review process that ensures research is evaluated by scientific experts based on merit.

For people with CF, stable, science-driven research funding is essential. Scientific discoveries often take years to develop into new therapies, and allowing funding decisions to shift with changing political priorities could disrupt promising research, delay breakthroughs, and create uncertainty for researchers and patients alike.

In our comments, the Foundation urged OMB to withdraw the proposal and preserve a transparent, evidence-based grant review process that prioritizes scientific excellence and the needs of patients over politics. Alongside partners in the United for Cures coalition, we also joined 57 patient organizations in a letter urging Congressional leadership to press OMB to withdraw the proposed rule.

Those advocacy efforts are beginning to gain traction. Senator Susan Collins, Chair of the Senate Appropriations Committee, recently urged OMB to withdraw key portions of the proposed rule. More recently, the Senate included language in its CR that would temporarily prevent OMB from implementing these changes.

Read our full comments >>

At Great Strides events across the Chicagoland area, Chicago Chapter Advocacy Chair Christy Clow created an innovative Art & Advocacy station where children had a fun way to engage in advocacy by creating paintings, drawings, and notes to share with their members of Congress.

While kids created artwork, Christy spoke with parents about advocacy opportunities and recruited them to sign up for action alerts. It's a creative example of how advocacy can be woven into Foundation events, creating meaningful opportunities for families to share their voices.

Across the country, the Foundation continues to work alongside advocates to protect and strengthen state programs that help people with CF access the specialized care, services, and financial support they need. This state budget season brought several important developments for the CF community:

Michigan: Governor Whitmer signed the FY 2027 budget into law with level funding for the Children's Special Health Care Services (CSHCS) program, which helps children and some adults with eligible chronic health conditions, including CF, access essential health care services and support.

Pennsylvania: The FY 2026–27 budget fully funds the Adult Cystic Fibrosis and Other Chronic Respiratory Illnesses line item at $795,000, helping ensure CF care centers can continue providing high-quality care and financial assistance to eligible patients.

New York: The FY 2027 budget includes $388,000 for the Adult Cystic Fibrosis Assistance Program (ACFAP), which helps eligible adults with CF manage out-of-pocket health care costs. The Foundation continues to advocate for the program to become fully operational and secure its long-term reauthorization.

New Jersey: While the final budget included a reduction in funding for the state's cystic fibrosis program, the Foundation remains committed to working with state leaders and advocates to protect this vital resource and pursue opportunities to restore funding.

Thank you to all our advocates, whose voices help demonstrate the importance of protecting programs that support people with CF and their families.

Learn more about our perennial work to safeguard state programs >>

Compass, the Cystic Fibrosis Foundation's free service offering one-on-one support and CF-specific resources, does more than help people with CF and their families navigate insurance, financial challenges, and access to care. As part of the Foundation's Policy & Advocacy team, Compass also provides valuable insight into the real-world challenges facing the CF community, helping identify emerging trends that inform the Foundation's policy priorities and advocacy efforts.

So far in 2026, Compass has:

From medication coverage and insurance changes to housing and other essential needs, every conversation helps ensure the Foundation's advocacy is grounded in the experiences of people living with CF. 

Need support? Learn more about Compass or contact [email protected].

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