Here you can find news articles and videos for PBD-ZSD, GFPD and related rare disease news. 

#PauseForPBD: A SLU Doctoral Student Shares His Son's Journey by Christopher Ostertag

October 05, 2018

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

October 04, 2018

October 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). I invite the Telegraph readership to join our family and do an act of kindness to mark the day.

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

October 01, 2018

Giving Paige An Extra Boost

September 27, 2018

Thanks to the support from the community—and a local contractor—Paige Treen’s life and that of her parents Gail and Peter is about to get simpler.

Hope in the Face of a Rare Genetic Condition

July 03, 2018

After experiencing her daughter's devastating diagnosis, Melissa Bryce Gamble started the Global Foundation for Peroxisomal Disorders.

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

July 02, 2018

Four nonprofits partner to develop inclusive playground!

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

May 22, 2018

Riley Duquette was born in May 2012 with a rare disease that falls under the umbrella of Peroxisomal Biogenesis Disorders. PBD refers to disorders in the Zellweger Spectrum – rare, genetic, metabolic, terminal conditions affecting all major systems of the body.

His family – mother Karly Duquette and stepfather Shawn Moseley – put together the Running for Riley Fun Run/Walk last year as a way to raise money and awareness for families affected by rare diseases and to celebrate the health of those fortunate enough to participate, and the second annual event is set for Saturday. It’s also a way to bring the community together and enjoy a nice day outside, all while contributing to a worthy cause.

Kick It For Max

April 24, 2018

Monday night NCHS Lady Iron Soccer held their annual Kick it for Max and the GFPD fundraiser, and TV10 from ISU was there and put together a wonderful little video segment.

Health on Earth Episode featuring Christine Yergeau of McGill University

March 13, 2018

McGill graduate, Christine Yergeau sat down with CKUT's Health on Earth Podcast to discuss peroxisomal disorders. She discusses what peroxisomal biogenesis disorders are and what her current research work entails. 

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

February 28, 2018

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

“We have lots of people in our community who spend months, if not years, looking for an answer,” said Marshall, a Peoria resident who is a board member for The Global Foundation for Peroxisomal Disorders.

A definitive diagnosis is something people with rare conditions often struggle to get. Peroxisomal biogenesis disorder-Zellweger spectrum disorder is indeed rare — only about 80 children are born with it in the U.S. every year.

Rare Disease Day

February 28, 2018

One in ten Americans is affected by a rare disease or disorder and more than half are children. For the Marshall family every other day in the year is celebrated as a blessing for their 7 year old child Ethan.

Newsmaker: Tulsa-based Peroxisomal foundation names director, board

February 16, 2018

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.

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

February 06, 2018

The competition for research funding is fierce, especially if your field is rare diseases and the source is industry. Five research teams from across Quebec qualified to enter the ring in Quebec City on December 6, challenging a panel of biotech “Heavyweight Champions” for $500,000 in financing. One team from the Research Institute of the McGill University Health Centre (RI-MUHC) was prepared to go the distance.

Rare Disease Day With The GFPD

January 29, 2018

This local news piece features Melissa Bryce Gamble discussing Rare Disease Day on KTUL's Good Day Tulsa.

December 22, 2017

"Before we got Gideon's diagnosis, we found it odd this was the ONLY way we could stop his crying. At 7 months old, he was diagnosed with something called Peroxisomal Biogenesis Disorder which (among other complications) has left him legally blind and severe-to-profoundly deaf. Once we knew he was blind and deaf, these raspberries made so much more sense! He still loves this, and is currently 4 and half years old!"

Family makes every moment count with terminal son

December 10, 2017

Jaxon is in hospice care at 7 months old. He was diagnosed with peroxisome biogenesis disorder at two months old. PBD is a rare, genetic and terminal condition, according to the Global Foundation for Peroxisomal Disorders. Doctors determined Jaxon has Zellweger Syndrome.

Dr. Nancy Braverman: Champion of the AmorChem KNOCK OUT!

December 08, 2017

The Contenders of the fourth AmorChem KNOCK OUTTM Event valiantly climbed into the ring and duked it out against a panel of Heavyweight Champions for a chance of winning a coveted $500,000 financing from AmorChem. Earlier in the fall, AmorChem, the innovative venture capital seed fund, launched a province-wide call for proposals to participate in its KNOCK OUT Event.

Trekking for Thomas Fun Run

December 01, 2017

A big event this weekend is honoring a Lake Highlands 9-year-old who is losing his sight and hearing. Thomas Martinelli and his family joined Good Day to talk about what's planned and why.

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

November 16, 2017

Belmax De Jesus, of Princeton, is a single mother. Her 8-year-old son Jaxson was diagnosed with Peroxisomal disorders, a rare group of conditions that ravage a person’s body.

Jenna Bush Hager on Her New Book and What She’s Reading Now

October 31, 2017

Bush Hager was the special guest at an event hosted by Real Simple and Nextdoor, the private social network for connecting neighbors, in Dallas, Texas. The gathering featured a discussion with local influencers on the importance of community and on how neighbors have helped each other, which was especially poignant in light of Hurricane Harvey in nearby Houston. The event also included a block party hosted by Nextdoor where the 2017 Dallas Good Neighbor Award was presented to sisters-in-law Meagan and Kim Martinelli, who created a fun run in their neighborhood to raise money for the Global Foundation for Proximal Disorders to honor Kim’s son Thomas, who has a genetic disorder. They were able to raise over $10,000 for the cause.

THIS UNICORN WHEELCHAIR COSTUME IS TRULY MAGICAL

October 30, 2017

5-year-old Maddie Holt will be sporting a custom Unicorn costume this Halloween thanks to the nonprofit, Magic Wheelchair

A walk for a child with a rare disease in Saint-Quentin

October 24, 2017

Thomas Thériault, of Saint-Quentin, will celebrate his second birthday on November 24. His community recently gathered to support him by hosting a fundraising walk. 

Thomas Jefferson Primary recognizes PBD Awareness Day

October 05, 2017

Thomas Jefferson Primary School is stepping in to help. Pause for P-B-D, or silly sock day, is a day for awareness.

Jersey County Journal - Letter to Editor for Pause for PBD

October 05, 2017

The Jersey County Journal featured a letter to the editor, from Vicky Maag, about our annual fundraising effort, Pause for PBD.

Pause For PBD Covered on KTUL in Tulsa

October 04, 2017

Good Day Tulsa interviewed Melissa Bryce Gamble about the upcoming #PauseForPBD event.

Pause for PBD

October 02, 2017

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.

Jimmie Trammel: Too-short life of child results in support for others

October 02, 2017

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

September 22, 2017

Journal Star of Peoria, IL Letter to Editor about Pause for PBD

September 18, 2017

The Journal Star of Peoria, IL featured a letter to editor about Pause for PBD from Jeff & Pamela Marshall. 

Running for Riley event to be held Sunday at White Park

June 06, 2017

Riley Duquette is a 5-year-old boy from Concord who was born with Peroxisomal Biogenesis Disorder. There is an event at White Park this Sunday to benefit the Global Foundation for Peroxisomal Disorders, which has greatly helped Riley's family over the years. Courtesy

NYT Article Highlights Dr. Braverman's Work on Peroxisomal Disorders

September 06, 2015

This article in the New York Times tells a familiar story about families seeking treatment for their children suffering from a rare disease. Like those families, our families also rely on Dr. Nancy Braverman of McGill University in Montreal for much of our hope. Dr. Braverman is a researcher dedicated to PBD-ZSD and other related rare diseases, and attends our Family & Scientific Conferences to meet with our families and children with PBD.

UNMC researcher heads $3.3 million national study

October 20, 2014

UNMC researcher William Rizzo, M.D., has received a five-year, $3.3 million grant to study 10 rare diseases that affect children beginning in infancy or early childhood and throughout their life.

Riley crowned cutest baby

August 12, 2015

Six month old Riley Brown, who has PBD-ZSD, was named "Cutest Baby" in a contest held by the Otago Daily Times.

Five Questions with Melissa Bryce Gamble

December 09, 2016

Child’s illness inspires local woman to start nonprofit organization

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