STAR Founder meets the mother of rare disease advocacy movement
STAR Founder Jessica Foglio had the opportunity to meet with a giant in the field of rare disease, Mrs. Abbey Meyer.
This summer, STAR Founder Jessica Foglio had the opportunity to meet with a giant in the field of rare disease, Mrs. Abbey Meyers. Abbey is known as the mother of the rare disease advocacy movement. Her relentless journey to advocate for her son, who was diagnosed with Tourette’s syndrome in the 1970’s, lead to the creation of the National Organization for Rare Disorders (NORD) in 1983. NORD was the the first US nonprofit to advocate and represent the voices and needs of all individuals and families affected by rare diseases and Abbey served as President until 2008. Abbey learned about Salla disease and STAR’s international community; she advised Jessica to look to families as the guiding force to steer STAR’s priorities and progress, and to never give up hope!
See Abbey receive lifetime achievement award from NORD here.
