CF Advocacy

Cystic Fibrosis Foundation – Teen Advocacy Day 2025

CFF Teen Advocacy Day 2025: I was nominated as a teen representative for the Northern California Chapter of the Cystic Fibrosis Foundation at Teen Advocacy Day 2025. This two-day national event brought together teens from across the country to share stories and advocate for critical issues impacting the CF community. I participated in virtual training and engaged in advocacy meetings, serving as a voice for my chapter and contributing to efforts that raise awareness and drive meaningful change.

The Cystic Fibrosis Foundation (CFF) is a nonprofit organization founded in 1955 dedicated to improving the lives of people with cystic fibrosis through research, drug development, advocacy, and care. It funds scientific breakthroughs, supports specialized care centers, and empowers the CF community by raising awareness and advancing policies to help those living with the disease.

Teen Advocacy Day meeting talking points:
• Introduced CF Foundation and teen advocates; shared personal connections to CF.
• Explained CF as a progressive genetic disease with no cure; ~40,000 people in the U.S. live with it.
• Noted major progress in life expectancy, but barriers remain for those without access to new therapies.
• Emphasized Medicaid's critical role: covers 50% of children and ⅓ of adults with CF.
• Highlighted concerns about proposed Medicaid changes (work reporting requirements, funding restrictions) that could jeopardize care.
• Main ask: Urge Congress to oppose any cuts to Medicaid to protect the health and lives of people with CF.

CFF Magazine Article (May 2025)

Since May is Cystic Fibrosis Awareness Month, I feel honored that my article was published in the Cystic Fibrosis Foundation magazine in May 2025 (accessible here). In it, I introduced myself as someone living with CF, shared my life with the disease, and aimed to promote advocacy, raise awareness, and support fundraising for the CF community.

Cystic Fibrosis Research Institute (CFRI) Documentary Interview

I was recently interviewed and filmed by the Cystic Fibrosis Research Institute (CFRI) for a new film project focused on sharing personal stories of living with CF. During the interview, I spoke about my journey of receiving a CF diagnosis, the challenges of raising awareness among family, friends, and the importance of building connections with others of South Asian origin who are affected by this disease.

Watch the film on YouTube

Watch / download the film on Podbean

Coming from a South Asian background, I feel a strong responsibility to advocate for CF awareness in my community. A common misconception is that CF is solely a "Caucasian disease," which often delays recognition and diagnosis in people of color. In my case, it wasn't until my freshman year of high school in 2024 that I self-diagnosed based on my symptoms, later confirmed by genetic testing.

Through this film and my advocacy, I hope to shed light on these overlooked realities, challenge existing myths, and encourage earlier diagnosis and better awareness across diverse communities. CFRI's Executive Director and videographer came to record my story, and I am honored to be part of this effort to give CF a broader, more inclusive voice.

The Cystic Fibrosis Research Institute (CFRI), founded in 1975 by a small group of CF families whose children were not expected to survive their teen years, is a nonprofit organization dedicated to advancing cystic fibrosis research, raising awareness, and supporting individuals and families affected by the disease. Incorporated as a 501(c)(3) organization, CFRI provides innovative research funding, educational programs, advocacy, and psychosocial support, aiming to improve understanding of CF and promote better care and resources for all communities.