Nelson's Story


After 25 years of leadership and devotion, Cindy D Luxhoj, ALGSA Executive Director, will be stepping out of her role and retiring at the end of September 2018 as part of her long-term vision as Founder of the ALGSA. Building this organization was a labor of love and continues to help the ALGS community, with focus on finding the cure.

Through the years the ALGSA has connected families, delivered resources, participated in clinical trials and ALGS science, and strived to be a go-to resource for families, clinicians, scientists, and more. With these accomplishments, the entire ALGS community has and will continue to benefit from Cindy’s work associated with the ALGSA. We thank her for years of dedication, breaking down barriers, bringing families together, and helping to build a wonderful new ALGS board ensuring a bright future for the Alagille Syndrome Alliance. We are eternally grateful for Cindy’s achievements which have now set the stage for a new chapter for the ALGSA.

Cindy plans to travel and enjoy this phase of her life. The ALGSA and Cindy have mutually expressed the desire to continue collaborations in the future while honoring the legacy she has created as the Founder. The ALGSA is committed to continuing its focus on pushing needed research forward to find better treatments and a cure. Along with that, we are committed to strengthening our partnerships, being a reliable resource for clinicians, scientists, nonprofits, families, and more which is of the utmost importance to us.

We are dedicating this year’s Fight for a Better Life campaign to Cindy as she is a true champion, fighting every day for 25 years for a better life for those affected by ALGS. We thank her for her service, her ingenuity, leadership, compassion, and dedication. As you, our supporters, contributors, and families set up your teams for the 2018 Fight For A Better Life campaign in the coming months, please keep Cindy’s motivation in your thoughts. We are focused on supporting the discovery of better treatments and finding the ALGS cure. Together we can win this battle for Cindy’s daughter Alaina, all the ALGS Fallen Warriors, and every ALGS Warrior around the world.

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Rare Disease Care

Rare Disease Care

One of the key challenges in rare disease care is the limited understanding of these conditions. Many rare diseases are genetic or congenital, and research into their causes and potential treatments is often underfunded. Patients and their families frequently face diagnostic odysseys, enduring years of uncertainty before receiving a proper diagnosis.

ALGSA Symposium 2024

Come join other ALGS families at a fun and informative event. We have topics to fit every ALGS family from ALGS 101 to deep dives into the genetics of ALGS and current research on the disease.