There are currently 7 members on the SDSF board who all volunteer their time to run the organization. The President currently acts as the Executive Director in the day to day management of the Foundation and is assisted by a part time secretary.
- Blair Van Brunt-MA
- Drug Discovery Committee, Past President 2008-2012, Vice President 2004-2008, mother of 3 children and the 3rd child with SDS. SHe also works for a yacht charter company and is in a bluegrass/folk band as vocalist.
- Bryan Sample-TX
- Treasurer since 2007, has 3 children, one of whom has SDS. He has included corporate fundraising as part of his duties on the SDSF. He is a lawyer by trade and donates his time to other non-profit organizations in his hometown.
- Donna Garfield-VA
- Secretary since 2009, Donna is married and mother of 2 grown boys, one with SDS. Donna has served SDSF for a number in many capacities.
- Ed Bickel-VA
- Ed has served on the Board since 2011. He is married and is a father of 2 girls, one with SDS. He will help with the Facebook page and furthering awareness of SDS in the world.
- Dr. Sridhar Mani-NY
- Sridhar will serve on our newly formed Discovery committee. His expertise in the medical world will be most helpful as we start down the pathway towards finding drugs for treatments and cures for SDS. He has a nephew with SDS.
- Sue Mattheisen- MD
- Sue is mother of a 5 year old son who received a genetic diagnosis of SDS shortly after birth and a daughter age 7. She lives in Maryland and works in a not-for-profit organization focused on health care quality. Sue joins as Vice President.
- Christine James - MD
- Christine is mother to Bodie, who had a bone marrow transplant on 1-21-11. She is a stay at home mom due to the many hospitalizations, doctors appointments, and illnesses Bodie endured. She is a Navy wife too. Christine joins as a Family & Bone Marrow Transplant Support Liaison.
- Kim McDowell
Kim has served as adminstrative assistant for SDSF for 12 years. SHe is mother of 5 and Director of Recreation in her community.