Running for Riley to benefit the GFPD

Sunday, June 11th, the residents of Concord, NH will come together at White Park to raise awareness and help celebrate the strength and courage of Riley Duquette in the first annual Running for Riley race. Riley was diagnosed with Zellweger Spectrum Disorder soon after his birth, an extremely rare genetic condition that affects all the major systems of his body. Riley’s stepdad and event planner Shawn Moseley tells us, “our family has put together this event to help raise awareness for those families affected by rare diseases, and to celebrate the health of those fortunate enough to participate.” Many organizations, businesses, and individuals have helped put this event together. Moseley sha

Connection to other PBD families brings Montesclaros family back to 2017 Family and Scientific GFPD

The GFPD Family & Scientific Conference is for everybody – families with living children with PBD, and those with children who have passed, plus their extended families, friends, and anyone who cares about a family affected by peroxisome biogenesis disorders. Programming at our conferences runs the gamut from panels with scientific researchers, clinicians, and educators; caregiver roundtables; sibling sessions; and group support for all families. I asked one bereaved mother of a child with PBD what brings her back to our conferences, even though her child is no longer living. Raissa, thanks for helping paint a picture of what the conference means to you. What makes you come back to the GFPD

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P.O. Box 33238

Tulsa, OK 74153

CONTACT US

Email: contactus@thegfpd.org

phone: ‪(405) 418-6061‬

fax: 918-516-0227

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