Wolfram Syndrome Global Awareness Day launch!

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 - .
Wolfram Syndrome
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

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The Ellie White Foundation is a 501(c)(3) public charity and so the full amount of any contribution you make will be deductible for federal income tax purposes.
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