RARE Global Advocacy Alliance Member Spotlight: Christopher Velona

Organization Name: Project Sebastian

Disease Affiliation: Batten Disease

Organization Mission
We offer a community group support system that can help you deal with so many emotions, questions, and uncertainty. Our support groups are designed with the individual need in mind, to help that person be a part of a community.

What led you to the rare disease community?
My son’s first diagnosis was in epilepsy 2008, then later properly diagnosed after genetic testing for Batten disease cln8. You could say we had two diagnosis days.

What do you think are the areas that are lacking in the community (specific to your org or in general)?
Lack of emotional support and understanding the crippling effect on everyone in the rare disease space. I think its great that there are many patient-led data organizations, but there needs to be more support systems in place. We hope to bridge the gap here with our weekly rare disease support group here in Los Angeles, California

What do you think are the areas that are lacking in the community (specific to your org or in general)?
Lack of understanding in today’s rare. There are two groups. The first are the normal families that have healthy children and second, the rare families that have a disease, terminal or special needs children. The normal family who has none of these challenges does not understand the rare families needs and challenges. They will try to understand in the beginning but most will run from them because it is too difficult to see the kid deteriorate over time. Also, it makes it very hard to have adult relationships with normal families because the rare ones never have time due to doctors appts, clinical meetings, meds and just being exhausted. The normal families move on and forget about the rare due to lack of education, empathy and patience. Very few will try. That goes for family members as well. Pain point # 2. Some family members will just not even acknowledge the rare disease at all and blame them for not doing enough or being there for their family. Pain point # 3, Divorce. I can speak to this as well. Its just awful. The children suffer, the family suffer and friendships are destroyed. If there was a group to help us navigate all of this?? 🙂

What are your areas of expertise?
Years of therapy (my own and couples), counseling others (my own company csg consulting), and having a rare disease adult. My son Sebastian. I have become a changed man since my son’s Sebastian diagnosis. A better man hopefully.

Please describe any major milestones your organization has hit or has coming up that you are proud of.
In the beginning we did all we could do to bring awareness. The dinners, raffles, car washes and bake sales. Eventually, we got noticed in our local government. California State resolution 25 Batten disease awareness weekend was brought before the Senate and the house in 2018; Batten disease awareness month Los Angeles County, by the Los Angeles board of supervisors. We are still trying with congress as we speak for more awareness. It will never stop.

What is your hope for the future for rare diseases?
To have cures and stop chasing the money

Learn more about the Global Advocacy Alliance. If your organization is already a member of the Global Advocacy Alliance and would like to be considered for a spotlight in a Global Genes monthly newsletter, please fill out the Global Advocacy Alliance: Member Spotlight Form.