Terri Gibbs Email and Phone Number

In 2008 Terri's son was diagnosed with Parry Romberg Syndrome. Faced with an extremely rare disease, and little published information, Terri and her husband, Jeff, founded Helping Hands for Hank, an organization to raise awareness and offer financial aid and support to now 17 year old Hank Gibbs as he fights Parry Romberg Syndrome.Parry Romberg Syndrome is an extremely rare, progressive auto-immune disease that causes neurolgical problems and "hemi-facial" atrophy meaning it "wastes" half the face away. Only about one in 6 million worldwide have this disease. The disease can cause brain lesions which can cause seizures, epilepsy, blindness, migraines and strokes. HH4H offers informational support for other parents faced with finding medical professionals to treat their children, referring parents to specialists throughout the United States. HH4H also raises awareness for PRS and has been instrumental in getting California Insurance companies to recognize PRS as something more than cosmetic. As part of the effort to raise awareness, HH4H established spearheads the celebration of Rare Disease Day each year in the town of San Luis Obispo, bringing it to their children's elementary school and high school. Informational materials as well as videos and speeches take place as well as the students wearing green (the color for Parry Romberg Syndrome...which was chosen because it is Hank's favorite color).