GFPD News 

The GFPD advocates for Paid Leave for Family Caregivers Across the Lifespan

The GFPD advocates for Paid Leave for Family Caregivers Across the Lifespan

Over the past year, millions of family caregivers found themselves needing to isolate or take leave to care for family members, scrambling to fill gaps in care—often without paid leave—as many older adults and people with disabilities lost access to services. Many people are sandwiched between providing care to an older adult or relative with a health condition and typical childcare duties. Children with disabilities relied on family caregivers not only for lost services, but for school demands as well. With the limited exception tax credits to cover a narrow scope of COVID-related leave, federal response legislation to the coronavirus pandemic has largely excluded support for family caregivers. The GFPD signed to a letter spearheaded by the National Alliance on Caregiving, UsAgainstAlzheimers, and The Arc to urge the Biden Administration to prioritize these families when developing additional—and needed—economic recovery policies, including a permanent paid family and medical leave policy that is inclusive of all family caregivers across the lifespan.

UNMC researcher heads $3.3 million national study

UNMC researcher heads $3.3 million national study

Dr. Rizzo said several of the diseases are so rare that between 500 and 1,000 children nationwide may be affected. Some diseases are even more rare than that, he added.

Pause for PBD

Pause for PBD

Melissa Bryce Gamble shares the story of her daughter Ginny's battle with a peroxisome biogenesis disorder (PBD) and how Tulsans can help support PBD research on October 5.

This unicorn wheelchair costume is truly magical

This unicorn wheelchair costume is truly magical

She's five-years-old, loves all things pink and glitter, and will be sporting a pretty magical costume this Halloween. But what makes Maddie Holt's costume extra special is that it was designed specifically for her wheelchair.


Texas Parents Calm Baby with Kisses Before Learning He's Blind: 'We Didn't Know What Was Wrong'


Texas Parents Calm Baby with Kisses Before Learning He's Blind: 'We Didn't Know What Was Wrong'

Gideon Jolicoeur, 4, was born with a rare condition that impacts his hearing and eyesight — so his parents cuddle him with kisses


Peoria family promotes Rare Diseases Day for 7-year-old son


Peoria family promotes Rare Diseases Day for 7-year-old son

It was a horrible diagnosis, but looking back, Pamela Marshall is thankful her son Ethan got it so early in life.

Running for Riley Fun Run/Walk is another great race for a great cause

Running for Riley Fun Run/Walk is another great race for a great cause

Riley grew up playing at White Park, ringing the chimes and riding the swings, so it seemed like a natural fit for an event like this.

Letter to the Editor: Do an act of kindness to mark Pause for PBD

Letter to the Editor: Do an act of kindness to mark Pause for PBD

Peroxisomal Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic, condition affecting multiple organ systems in the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare, genetic disease that most people have never heard of and has no cure.

The GFPD joins with the TS Alliance to Advocate for Prioritization of Individuals with Rare Diseases and their Caregivers to have Immediate access to COVID-19 Vaccines.

The GFPD joins with the TS Alliance to Advocate for Prioritization of Individuals with Rare Diseases and their Caregivers to have Immediate access to COVID-19 Vaccines.

On February 12, 2021, the GFPD joined with the TS Alliance and 69 other advocacy groups, healthcare providers and biotech companies to submit a letter to the National Governors Association imploring them for immediate and improved access to COVID-19 vaccines. Additionally, following the lead of the TS Alliance, the GFPD created a template letter for parents and caregivers of individuals with peroxisomal disorders to personalize and submit to their respective local officials requesting immediate vaccine access. GFPD families can reach out to operations@thegfpd.org for a copy of this letter.

Letter: Pause for PBD, think of Ethan

Letter: Pause for PBD, think of Ethan

Oct. 5 is a special day for our family as we celebrate Pause for PBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). Our son, Ethan, is seven years old and is one of 175 children known to the GFPD living worldwide with Peroxisome Biogenesis Disorder (PBD).

NJ mom to run Philly marathon to bring attention to rare disease

NJ mom to run Philly marathon to bring attention to rare disease

De Jesus says that it was a specialist in Canada who diagnosed Jaxson with Peroxisomal disorders. The conditions are so rare that if 4 million children are born this year, less than 100 will have the disorder.

Champion of the 2017 AmorChem KNOCK OUT event: Team Braverman!

Champion of the 2017 AmorChem KNOCK OUT event: Team Braverman!

Dr. Braverman’s work focuses on genes responsible for the proper function of peroxisomes, which are important components of cells that help to metabolize lipids, or fatty acids.


Health on Earth Episode featuring Christine Yergeau of McGill University


Health on Earth Episode featuring Christine Yergeau of McGill University

Bloomington's Harmony Park will be a place for every kid to play

Bloomington's Harmony Park will be a place for every kid to play

Four nonprofits partner to develop inclusive playground

The GFPD (along with hundreds of other U.S. nonprofits) advocates for additional 2021 COVID relief, led by the National Council of  Nonprofits.

The GFPD (along with hundreds of other U.S. nonprofits) advocates for additional 2021 COVID relief, led by the National Council of Nonprofits.

At this time of a worldwide pandemic, economic uncertainty, and national turmoil, there can be little doubt
that America desperately needs leadership, unity, and aggressive actions to overcome these and many other challenges. The GFPD, along with hundreds of other U.S. nonprofits asks Congress and the Administration to recognize the unique role of charitable nonprofits in providing pandemic relief and economic recovery by enacting a package of relief solutions tailored to the actual needs and realities of these organizations that are devoted to serving the public good.

Business Perspective with Melissa Bryce Gamble: Use this checklist to start your nonprofit

Business Perspective with Melissa Bryce Gamble: Use this checklist to start your nonprofit

Melissa Bryce Gamble is president and co-founder of the Global Foundation for Peroxisomal Disorders, which serves over 400 families across the globe.

Family makes every moment count with terminal son

Family makes every moment count with terminal son

Jaxon’s health has had a backslide lately. The hospice nurses hope he will make it to Christmas — the day after, he’ll be 8-months old, Mack said.

Newsmaker: Tulsa-based Peroxisomal foundation names director, board

Newsmaker: Tulsa-based Peroxisomal foundation names director, board

The Tulsa-based Global Foundation for Peroxisomal Disorders has named Melissa Bryce Gamble as its first executive director and appointed four new members to its board of directors.

Kick It For Max

Kick It For Max

Kick It For Max
A local high school soccer team is helping their coach’s family.


​Good Day Tulsa interview with Jen Kerckhoff and Emily Webb about Hues for Hope.


​Good Day Tulsa interview with Jen Kerckhoff and Emily Webb about Hues for Hope.

CONTACT

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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© 2021 by The GFPD. 

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

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