Team #FiredUpforALGS – 2025 Campaign

In 2024, our team raised an incredible $12,288—thank you to everyone who gave so generously! This year, we’re aiming even higher with a goal of $15,000 to support ALGS patients and families through the Alagille Syndrome Alliance’s (ALGSA) family programs which include disease education, email and phone support, facilitation of local resources and services, referrals, financial assistance, higher education scholarships, and much more. 

This cause is deeply personal. I'm not only the President of the ALGSA—I’m also a mom to twin daughters, one of whom lives with Alagille Syndrome. We've walked this road for over 21 years, and yet, ALGS still finds ways to surprise us.

In 2023, my daughter Cloe was diagnosed with hepatocellular carcinoma at just 19 years old. Immediately, she was transferred from pediatric hepatology to adult oncology and adult hepatology. After a successful tumor ablation, she was placed on the transplant list in September 2023. Her health declined steadily until June 26, 2024, when a family friend became her living donor --- an extraordinary gift. Today, nearly 11 months post-transplant, Cloe is working each day to navigate her new normal and deal with transplant challenges as they come. Transplant is not an ALGS cure and so Cloe also manages other aspects of ALGS affecting her. 

Alagille Syndrome is overwhelming. For some, it's the medical complexities and uncertainty. For others, it's the mental toll, the crushing financial strain, or the stress of a long-term balancing act of ALGS and work, appointments, hospital stays, and life outside of the disorder. ALGSA family programs exist to lift some of the burden. From financial assistance, a Christmas adoption program, and educational tools to physician referrals, local resource referrals, and mental health support, these programs meet families where they are—often in their most fragile moments.

Since 2019, the ALGSA has provided over $165,000 in direct financial assistance to families in 14 countries, helping them cover critical needs like medications, housing, and basic necessities.. We've ensured families in need get to celebrate Christmas by providing 181 Christmases in 29 states and 18 countries. We answer calls, offer guidance, and sit with families in the darkest hours—because no one should face ALGS alone. 

This year’s Stronger Than ALGS campaign is about more than fundraising. It’s about resilience. About families like mine rising up again and again despite fear, grief, and uncertainty. Rising from the FIGHT for a Better Life, we are working to continually move into the future stronger than ALGS. 

We are stronger together.

💛 Will you partner with us today? Your gift fuels real help, right now, for real families. 

#StrongerThanALGS
#FiredUpforALGS