GFPD Advocates attend Rare Disease Week in Washington, D.C.

​ ​The mission of the GFPD is to improve the quality of life for families facing peroxisomal disorders and make strides toward meaningful research that can help improve the quality of life for these families. One of the ways we are accomplishing that mission in 2019 is by taking a team to Washington, D.C. for Rare Disease Week, February 25-28th. Our team includes parents of individuals with peroxisomal disorders including, Katie and Ted Sacra, Corin Chapman, and Chris Ostertag, GFPD friend Julia Ridgway, and GFPD Board Member David Lapidus. Through the generosity of the EveryLife Foundation, members of our team will have the opportunity to fulfill the GFPD’s mission by advocating on Capito

Archer's feeding tube experience

When Archer was born, he had difficulty nursing and gaining weight and was diagnosed with failure to thrive. We began to supplement with formula, but his weight gain remained slow and minimal. We didn’t know he had pbd at that time. As he’s grown he has expanded his palate, but eating remained a regular challenge for many reasons. He was picky for one, and he would often gag when introduced to more complex textures. I struggled to get him to eat enough and in a reasonable amount of time, and as he got older he became increasingly too distracted to sit as long as I needed him to. Our family meal times deteriorated as my sole focus was on Archer’s nutrition. I began to feel anxious before meal

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 Images on this site were contributed by families and may not be used without permission.

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