Our mission
CASK Warriors Foundation is a nonprofit that is focused on funding a gene therapy cure for CASK Gene Disorder. The most desired outcome for those affected with CASK Gene Disorder is the complete elimination of the disease and gene therapy is the only way to achieve this goal.
Our vision
The funds that are raised by CASK Warriors Foundation will be used to fund gene therapy for boys with CASK Gene Disorder as other treatments for CASK are unlikely to have a significant effect due to the large size of the CASK gene, its effects on the brain and nervous system, and the numerous downstream effects on the human body and physiological functioning caused by a mutation on the CASK Gene.
Get to know us
As a non profit foundation, our purpose is to raise funds and donate them to scientific research that is focused on first creating gene therapy cure for CASK Gene Disorder.Our mission is to cure CASK for all children, first the boys, and then all girls as well.
In order to raise funds, we need volunteers. Volunteers are the lifeblood of our organization. Volunteering your time and efforts could lead to a breakthrough gene therapy for CASK Gene Disorder. The technology from this treatment could be utilized to help other diseases as well.
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 one in a million—literally. Diagnosed with a rare neurological condition called a CASK gene mutation, Anthony is among fewer than 500 known individuals worldwide facing this disorder. But his life is so much more than a diagnosis.
Born with developmental delays, hypotonia, and neurological differences, Anthony faces daily challenges due to his CASK-related disorder. While this rare condition can impact movement, speech, and cognitive growth, 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 in children, Anthony’s journey is a story of resilience. Through intensive therapies, a strong support system, and unwavering love, Anthony is thriving in his own unique way.
Anthony's courage inspired the founding of the CASK Warriors Foundation, a nonprofit dedicated to increasing awareness of rare genetic disorders, supporting families, and funding research into CASK gene therapies.
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 our understanding of CASK Gene Disorder and plan to pursue gene therapy research utilizing the latest and most advanced technology available to directly target and eliminate CASK Gene Disorder
Terry Storella
Founder / President
Bruce Levinsky
Media Relations
Helene Levinsky
Secretary/Treasurer