About Us

CASK Warriors Foundation Inc

Our Services

• Charitable fundraising to support medical and scientific research related to CASK gene disorder and other rare genetic neurological conditions

• Funding and supporting research initiatives focused on the development of effective, disease-altering therapies

• Supporting efforts to reduce delays in genetic diagnosis of CASK gene disorder in males through education, awareness, and research partnerships

• Helping bridge the gap between research discovery and future therapeutic development by supporting collaboration, data sharing, and translational efforts

• Public education and awareness initiatives related to rare genetic neurological disorders

• Advocacy and support services for affected individuals and their families

• Organizing charitable campaigns, volunteer initiatives, and research partnerships

Our mission

CASK Warriors Foundation is a nonprofit dedicated to accelerating research and scientific collaboration aimed at changing outcomes for individuals affected by CASK Gene Disorder.

Our mission is to help move the field beyond diagnosis and supportive care by supporting the research, data, and partnerships needed to enable the development of effective, disease-altering therapies.

Our vision

We envision a future in which children affected by CASK Gene Disorder are no longer limited by a lack of treatment options and families are not left waiting without answers.

By supporting rigorous science, responsible innovation, and collaboration across the rare disease community, CASK Warriors Foundation seeks to help transform CASK from a devastating diagnosis into a condition with meaningful therapeutic pathways and real hope for affected individuals and their families.

Get to know us

CASK Warriors Foundation is a nonprofit organization dedicated to raising funds that support scientific research, collaboration, and progress for individuals affected by CASK Gene Disorder.

Our work is guided by a commitment to help move the field forward responsibly, with a special focus on children who are most severely impacted, while striving toward solutions that ultimately benefit all individuals living with CASK.

Volunteers play a vital role in making this mission possible. From fundraising and outreach to advocacy and community support, the time and energy of our volunteers help expand awareness, accelerate research efforts, and strengthen the rare disease community.

By working together, we aim not only to advance understanding of CASK, but also to contribute to broader progress in rare genetic and neurological disease research.

Anthony's Story: Living Brave with a CASK Gene Mutation

Watch this video to quickly learn about CASK Gene Disorder, and get to know one boy with CASK, Anthony!

Anthony is truly one of a kind. Diagnosed with a rare neurological condition known as a CASK gene mutation, he is part of a very small number of individuals worldwide living with this disorder. But Anthony’s life is so much more than a diagnosis.

Born with developmental delays, hypotonia, and neurological differences, Anthony faces daily challenges related to his CASK condition. While the disorder can affect movement, communication, and cognitive development, Anthony meets each obstacle with courage — and a smile that lights up every room.

“Anthony is one in a million. We are blessed. He teaches us to appreciate life and be thankful for what we have. We wouldn’t change a thing — he is perfect the way he is.”

— Anthony’s Family

Despite the medical complexity of CASK gene mutations, Anthony’s journey is a story of resilience. Through intensive therapies, a strong support system, and unwavering love, he continues to grow and thrive in his own unique way.

Anthony’s courage and determination inspired the founding of the CASK Warriors Foundation — a nonprofit dedicated to raising awareness of rare genetic disorders, supporting families, and advancing research that may one day change outcomes for individuals affected by CASK.

His story reminds us that even in the face of uncertainty, love, hope, and determination can create powerful change.

Board & Leadership

Meet Our Team

Our strength lies in a deep commitment to understanding CASK Gene Disorder and the challenges faced by individuals and families living with this rare condition.

The CASK Warriors Foundation team brings together lived experience, dedication, and a growing network of scientific, clinical, and advocacy partners — all working toward advancing research, raising awareness, and supporting responsible progress in the rare disease space.