MISSION HIGHLIGHT | Equipment Exchange

The GFPD matches families who have medical or therapeutic equipment they are no longer using with other families in need. Jessica Gill, mother of Gretchen, shares her experience about the support she received, passed on, after her daughter was diagnosed with a peroxisomal disorder. Find out more about the Equipment Exchange program here: https://www.thegfpd.org/equipment-exchange "My Gretchen was diagnosed with Zellweger spectrum disorder when she was about six weeks old. Our lives were forever changed. We found the GFPD through a connection with another family, and that mom sent us some supplies and a special bed that would support Gretchen in the bathtub. We were so grateful to her for a

Melissa's Rare Disease Conference Wrap Up

During Ginny’s lifetime, I always thought of my role as simply being "Ginny's mom." Even though I spent my days fighting for equipment, or for her to see a particular doctor or therapist, I certainly never thought of as an advocate. Usually without realizing it, many parents DO advocate for their children whether they are born with a rare disease or not- we just want to make sure that our kids have the best opportunities to live happy and healthy lives. However, most days, living in the world of peroxisomal disorders is an intense battle in the trenches. EVERY day, and I do mean EVERY. DARN. DAY. is training in advocacy. From fighting for equipment to reading every journal article available

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P.O. Box 33238

Tulsa, OK 74153

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Email: contactus@thegfpd.org

phone: ‪(405) 418-6061‬

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