CEO, PRESIDENT & CO-FOUNDER
Heather Smith is CEO, President, and Co-Founder of SCID Angels For Life Foundation. She and her husband have lived in Lakeland, FL for over 18 years. Having had two children born with the Rare Disease, Severe Combined Immune Deficiency, and empowered to change the outcome for SCID babies around the world, Heather and John started the nonprofit foundation in 2008, SCID Angels for Life. During the +10-year battle to get SCID newborn screening added to the Universal Newborn Screening Panel (RUSP) and implemented in all 50 states, Heather played an instrumental role in this major achievement. Now, every baby born in the United States is screened at birth for this deadly disease.
Heather is currently the Patient Representative for a CIRM Clinical Advisory Panel and she previously chaired both the Steering Committee and Parent Advisory Board for the SCID Compass Program. For 8 years Heather sat on the Florida Genetics and Newborn Screening Advisory Council where shared the voice of the rare disease community.
Heather has a bachelor’s degree in child development from Central Michigan University.
Barb’s only child was born with X-linked Severe Combined Immune Deficiency. Despite his numerous medical complications, in 1997 she developed an internet listserv so that families with SCID children could connect and would no longer have to be isolated while coping with a rare disease.
Barb served as a member of the Board of Trustees for the Immune Deficiency Foundation for 18 years where she advocated for SCID patients, developing programs aimed to improve their quality of life including the national campaign for the implementation of SCID Newborn Screening. She was a founding board member for SCID Angels For Life.
A Virginia native and a graduate of Virginia Tech with a major in Finance, Barb brings not only the patient and parent perspective, but also a financial and business background. Her diversified career includes both private businesses and non-profits, varying from Chief Accounting Officer for a Washington, DC area homebuilder, to Communications Officer for The Royal Society of the Arts in the US, to owning and managing an automotive service business.