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.
10k Rare Diseases
Less than 10 cures
So how did this all begin...
Project Sebastian was started by the father of a young boy who was misdiagnosed in the beginning. 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. Seizures were becoming more frequent as well. "This is something more than epilepsy," said the father. Finally, after thorough genetic testing, we realized he actually had CLN8, a variant 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 the day February 28th as Rare disease day worldwide. There are very few treatments or cures for the 10,000+ rare diseases that men, women, and children suffer daily! We need your help to bring more awareness! You can help by advocating for rare diseases!