Batten disease claims the lives of most children and teens carrying this disease.
Our mission is to raise awareness and money through Project Sebastian for life-saving Gene Therapy Replacement. This therapy can save our son Sebastian's life and many others. Our goal is to raise $3.5 million. Help us get there.
We have partnered up with the world’s leading researchers studying gene transfer approaches to pediatric orphan diseases. This groundbreaking and innovative approaches allow us and others a real chance to eradicate this disease. A, first of its kind, a clinical trial has begun at Nationwide Children’s Hospital to evaluate this investigative treatment, providing hope for children with Batten disease all around the world. Helping others and sharing this info is a must!
We are very excited to announce our very first run!!
The Batten Warrior 5K run/walk benefiting Project Sebastian!
This amazing Run/Walk will be held on June 6, 2020! We are now taking on sponsors so please reach out to Christopher Velona or message us here to get in early! All sponsors welcomed as we are raising funds to cure Batten disease worldwide! More details to come!! Click on the race guy to register!
Join us at one of Santa Clarita's best parks!
West Creek Park
24247 Village Circle, Valencia, CA 91354
On-line registration brought to you by