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