TULSA, Okla — A local non-profit is helping a Bartlesville family navigate life after the diagnosis of a rare genetic disorder.
The Global Foundation for Peroxisomal Disorders started right here in Tulsa and was created to raise awareness and find a cure.
Ahead of their annual fundraiser, the foundation is reminding people how they can help.
Peroxisomal disorders are genetic and very rare, they affect mostly children.
Some symptoms of peroxisomal disorders include loss of hearing and vision, neurological issues, developmental delays, feeding issues, and can lead to liver, kidney, and bone diseases.
Across the globe, 1 in 50 thousand kids face peroxisomal diagnoses each year, and with the help of the GFPD, families dealing with this rare disorder are finally getting some answers.
Founded in 2010, after her daughter was diagnosed with peroxisomal disorder, Melissa Bryce saw the need for families like hers to have a place to go, to answer questions, feel supported, and feel heard.
Now twelve years later, the GFPD has helped more than 600 families across the globe.
Including a family in Bartlesville whose 6-year-old son was recently diagnosed with peroxisomal disorder.
About a year ago, five-year-old Hudson Hollander was diagnosed with peroxisomal disorder.
After years of questions, the family finally received a diagnosis which led them to the GFPD in Tulsa.
Hudson's mom, Tasha Hollander, told 2 News, “They let us know that we were not alone which was huge when you have a child that’s diagnosed with a rare disease you feel alone and you don’t know who to turn to”
“Our job is to help patients and families advocate for themselves and help them learn how to access the medical care that they need”, Bryce said.
Bryce's daughter Ginny died from peroxisomal disorder in 2015 but she said the goal remains the same.
To further that goal, the foundation created the annual Hues for Hope fundraiser.
Hues for Hope highlights local artists across the state and they auction off their art to raise money for the GFPD.
For Bryce, she said it's another way to remember her daughter Ginny.
For the Hollanders, they said finding the GFPD was like a light at the end of a very dark tunnel.
“It gives us direction and hope and the ability to help him and maybe find cures and maybe find ways to help him that he wouldn’t have had otherwise. So that is priceless to a family going through something like this”, Hollander said.
This year's Hues for Hope is September 16th, there are tickets available and Bryce said donations are always welcome.
“Hues for Hope is the annual fundraiser for the GFPD here in Tulsa. We have it every fall and this year we are hosting the event at Cain’s Ballroom and we’re very excited to be there”, Bryce said.
More information about the event can be found here.
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