WHO WE ARE. WHY DO WE EXIST.
WE ARE HERE TO END RARE DISEASES
Rare diseases claims the lives of most children and teens.
Project Sebastian provides funding, support, hope, and awareness of the urgency to fund new treatments and to help all families affected by all rare diseases.
6-8k Rare Diseases
Less than 10 cures
Project Sebastian was started by a father of young boy who was mis-diagnosed several times. Sebastian was diagnosed with epilepsy, then started losing his vision , then his cognitive abilities were slowly diminishing and now has trouble walking and talking.
Finally, after thorough Genetic testing, we realized he actually has CLN8 a form of Batten Disease.
OUR VALUES. OUR EFFORTS.
OUR MISSION AND VISION
Project Sebastian provides support, hope, and awareness of the urgency to fund new treatments to help all families affected by all rare diseases. We will provide education, patient therapies, and counseling within peer groups, and financial support where possible.
We envision a world where there is funding for treatment and cures for all and to help as many children and families suffering from rare diseases as possible. Our aim is to eradicate rare diseases, one patient at a time.
WHAT WE HAVE ACHIEVED SO FAR
Established a community of professionals, scientists, educators, caregivers and families to help you understand the challenges and daily struggles your dollars are put to work funding a variety of important projects.
June is Batten Disease awareness Month in California. Advocacy is a must! Without it there is no cure! We can help bring awareness!