National Volunteer Week: Fast Five Questions with Bishop Kelley High School Junior Brian Limekiller

Tell me about the volunteer work you’ve done for the GFPD. My school hosted a Pause for PBD event which I was able to organize where a bunch of students stuffed a ton of letters full of information for families affected by a PBD. What is your favorite volunteer memory? My favorite volunteer memory was jamming out to Christmas trap music with my friends that were at my table while we stuffed letters. Why do you think giving back through volunteer work is so important? I think giving back through volunteer work is important. It shows that you actually care about what you are volunteering for and you are doing it out of the kindness of your heart. If you do something to get paid you are not doi

National Volunteer Week: Longtime Volunteer Helps Connect Families with the Global Foundation for Pe

Pamela Marshall has been the Support Group Coordinator for the Global Foundation for Peroxisomal Disorders (GFPD) since 2010. Pamela first became involved with the GFPD through a parent email group after her son, Ethan, was diagnosed with peroxisomal biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD) in August 2010. PBD-ZSD is sometimes referred to as Zellweger syndrome, neonatal adrenoleukodystrophy, Infantile refsum disease, Heimler syndrome, Zellweger syndrome spectrum and Zellweger spectrum disorder. Through the parent group, she met Melissa Bryce Gamble and Shannon Butalla, the co-founders of the GFPD. Pamela was grateful to be connected to other families, but she saw an unmet ne

How to Work with Doctors and Hospice Care

Claire Helms is a wife, mother and family practice nurse who lives in Louisiana. Her daughter Presley died of Zellweger syndrome in May 2016, a day shy of 11-months old. Like any parent who experiences the death of a child, the memories are etched into her brain — her daughter’s initial diagnosis at 5 months; Claire’s disbelief and the questions that followed; appointments with specialists; hospital visits; and her precious time with Presley, who she worked so hard to protect every step of the way. From learning about Presley’s diagnosis to managing her daughter’s hospice care and end of life plan, the experience is one Claire will always carry with her. And while the memories can be difficu

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