History of peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD) Terminology

The GFPD was founded in 2010 to fill an unmet need to provide support to families facing one of several types of peroxisomal disorders. Today, we provide targeted support to patients affected by peroxisomal biogenesis disorder-Zellweger spectrum disorder and the related single enzyme deficiencies. Generally speaking, peroxisomal disorders can be broken into two categories: peroxisomal biogenesis disorders and single enzyme/protein deficiency disorders. They are diagnosed and treated similarly but caused by different genetic mutations. Peroxisomal biogenesis disorders affect the overall assembly and function of the entire peroxisome, whereas, single enzyme/protein deficiency disorders affect

Mother's Day

I have often been asked what it is like being the mom to a child with a peroxisomal disorder. The first time I was ever asked this question, I simply responded with, “It’s no different from being a mom to a typical child.” But in reality, it is very different- it is wonderful, scary, adventurous, challenging, fun, and a journey full of blessings. My daughter Anna Violet is one year old. She is deaf and blind with many health complications. She makes being her mom the most rewarding gift out there. Watching her overcome so many obstacles that life has chosen for her, is truly an amazing thing to watch. At 4 months old, she started physical therapy, she worked so hard and refused to gi

Honoring Our Bereaved Mothers

Alone and in the darkness, often feeling so incredibly hopeless: this was the reality of my grief for many, many months after my daughter, Lily, left this earth. Most don’t get the utter despair that comes with watching your child take their last breath. It’s hard to explain to others what it’s like feeling so empty- like there is a gaping hole in your heart that is never ever going to be filled. Then you add the complexity of having already lost one baby, taken before I could even see their eyes, feel their little toes, or watch them take even one precious breath. This grief is all consuming. It can make you feel like you have no place. It can make you feel like you have no worth. It is dee

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ADDRESS

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

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