WHO WE ARE. WHY DO WE EXIST.
WE ARE HERE TO SUPPORT YOUR RARE DISEASE
Project Sebastian provides support, action, and awareness for all families affected by all rare diseases.
Rare diseases claim the lives of most children and teens. While most people wait for a cure they have nowhere to turn. We offer a community group support system that can help you deal with so many emotions, questions, and uncertainty. We realize that connecting with other families is essential to this journey. We will provide you with group meetings and counseling so that you can connect with others who are struggling like you.
6-8k Rare Diseases
Less than 10 cures
So how did this all begin...
Project Sebastian was started by a father of a young boy who was misdiagnosed several times. Sebastian was initially diagnosed with epilepsy. Then over time, he began to lose his vision and cognitive abilities and had trouble speaking, walking, or even using utensils. Finally, after thorough genetic testing, we realized he actually had CLN8, a form of Batten disease
OUR VALUES. OUR EFFORTS.
OUR MISSION AND VISION
Compassion Education Advocacy
Project Sebastian provides support groups, individualized therapies, education, and resources to all families suffering from a rare disease. Through our support groups, we will address the day-to-day challenges of the rare disease world and help families manage through the highs and the lows.
We envision a world with funding for treatment and cures to eradicate all diseases. Until that happens we are here for you!
WHAT WE HAVE ACHIEVED SO FAR
We have established a community of professionals, scientists, educators, caregivers, and families to help you understand the challenges and daily struggles of how your dollars are working to fund vital projects.
Every year we recognize February 28th as, Rare disease day across the world. Without it, there is no cure for the 7000+ rare diseases that men women, and children suffer daily! We need your help to bring more awareness!