September 10, 2021
PRESS RELEASE – New Awareness Day Launched to Raise Global Awareness of Wolfram Syndrome – 1st October 2021
The Wolfram Syndrome Research Alliance is collaborating with Wolfram syndrome Patient Organizations around the world for the first ever Wolfram Syndrome Global Awareness Day on October 1, 2021.
On 10/1/1998 the late Dr. Alan Permutt (Washington University, St Louis) published his paper that first identified mutations in the WFS1 gene as the cause of Wolfram syndrome.
The aim of the Wolfram Syndrome Global Awareness Day is to educate medical professionals and to raise awareness in both the medical world and with the public about Wolfram syndrome (WS), a progressive neuro-degenerative genetic condition that affects 1 in 770,000 people worldwide.
The campaign will target Ophthalmology, Endocrinology and Diabetes specialists, medical centers and rare disease organizations about Wolfram syndrome, as these areas are likely to be the first to see a patient affected by this rare condition. By raising awareness, it is hoped that we may be able to identify currently undiagnosed WS affected individuals. There is great hope that treatments developed for Wolfram syndrome will be applicable to Parkinson’s disease, Alzheimers’ disease and other neurodegenerative disorders as well as other more common forms of diabetes.
A dedicated website for the Awareness day with information for interested medical professionals and the general public will go live on October 1, 2021 - https://www.globalwsday.org/ .
Wolfram Syndrome has 4 main features: Diabetes Mellitus (insulin dependent diabetes), Optic Nerve Atrophy (deterioration of the optic nerve which can lead to complete blindness), Diabetes Insipidus (water diabetes affecting the bladder), and Deafness. People with Wolfram syndrome also have neurological problems (loss of balance, deterioration of breathing and swallowing, anxiety, and depression among other symptoms).
There is no cure for WS, but current researchers are tirelessly searching for new treatments. You can help to support this profoundly important work by sharing information about WS and following our social media pages to help patients get diagnosed. All donations, small or large, can have a big impact on the work that WS fundraising groups do to support WS research and the WS community. These groups are listed on the WSRA website at https://www.wsresearchalliance.org/foundations-supporting-ws-research.html.
August 5, 2021
You've heard the saying, "Dancers don't need wings to fly?" Aurora's Ellie White is living proof. She has a very rare genetic disorder called Wolfram Syndrome that causes a number of serious health issues. Ellie's not letting it stop her, though, not in the least. She's a dancer, student and world traveler. She's overcoming the odds and inspiring all of us.
June 7, 2016
A crowd of more than 8,000 — in homemade team T-shirts in pink and green and glitter — bunched at the starting line for the JDRF Walk to Cure Diabetes on Sunday.
Near the back was 10-year-old Ellie White and her team of supporters waiting to begin their annual ritual of singing “Happy Birthday.” [...]
May 6, 2014
Families who want to have a baby, but are fearful of passing on a genetic disorder, now have more options. A controversial test called Preimplantation Genetic Diagnosis allows parents going through in vitro fertilization to select embryos that do not carry certain gene mutations.
With advancements in the last few years, PGD can now test for dozens of disorders.
Beth White, of Golden, decided to go through the testing. Her first child, Ellie, was born with a rare genetic disorder called Wolfram Syndrome. [...]
March 19, 2014
Downtown Wilmington’s Manna restaurant is once again attracting top chefs from beyond the Cape Fear region. This time, it’s Public Television series star chef Vivian Howard of Chef & The Farmer restaurant in Kinston.
Each year since 2012, Manna owner Billy Mellon has invited chefs to participate in a benefit to aid the Ellie White Foundation for Rare Genetic Disorders. The organization works to find cures for Wolfram syndrome and other diseases that receive little or no federal or private funding. [...]
October 5, 2012
She was the cute little girl from the dance group The Silhouettes who won our hearts on America’s Got Talent. But behind her smile is a brave little girl battling a terminal illness.
The 11-year-old from outside Denver, Colorado, has a rare genetic disorder that's stealing her eyesight and hearing. It is also expected to drastically shorten her life. [...]
July 19, 2012
Ellie White, 10, of Colorado, had recently taken her first ever surfing lesson, running into the surf and gingerly hopping on a board as she savors life before a rare, incurable disease robs her of her sight and hearing. [...]
July 6, 2012
Three years ago a little girl with the world at her feet was diagnosed with a rare genetic disease with no cure. Now 10-year-old Ellie White hopes to build awareness and help others. [...]
July 5, 2012
For the past two weeks, Wilmington has played host to a special guest. She’s only 10 years old, but is determined to make the most of her trip from Colorado. She has seen the beach and gone to a local play like many tourists might do. But she’s no ordinary visitor.
Her name is Ellie White, and she has a rare genetic disorder called Wolfram syndrome. [...]
July 3, 2012
Seeing a happy, little girl flit around and dance like not a care in the world affects her may seem normal. The innocence of youth, the hope for a bright future: It’s all evident in Ellie White’s performance with The Silhouettes on “America’s Got Talent.” In September of 2011, Ellie and her team performed for Sharon White, Piers Morgan and Howie Mandel, placing fourth second in the competition. By the looks of it, one wouldn’t assume this precious child endures a life-threatening disease. [...]