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 to. With so many emotions, questions and uncertainty we offer a community group support system. We have realized that connecting with other families is a very important part of this journey and we will provide you with group meetings so that you can connect with others who are struggling just 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 originally diagnosed with epilepsy. Then over time, he started to lose his vision, cognitive abilities, trouble speaking, walking eventually using a wheelchair.
Finally, after thorough Genetic testing, we realized he actually has CLN8 a form of Batten Disease.
OUR VALUES. OUR EFFORTS.
OUR MISSION AND VISION
Compassion Education Advocacy
Project Sebastian provides psychotherapy, support groups, education, and resources to all families suffering from a rare disease.
We envision a world where there is funding for treatment and cures to eradicate all diseases.
Project Sebastian will support each other through our network of peer counselors, support groups, and individualized therapists. We will address the day-to-day challenges and help you get through them.
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.
Rare disease day is February 28th!! Advocacy is a must! Without it, there is no cure for the 7000+ rare diseases that men, women, and children suffer from! We need your help to bring more awareness!