from Ronan Houssin
Organize events to donate funds for diseases. This is his willRoc Loisirs association based on Val d’OustIN Morbihan. Saturday, November 26, 2022Daniel Lucas and his team of volunteers will organize 32e Stride Roxédoises.
For more than 20 years, the Morbihan association has been fighting to defend the causes. This new edition of Strides and Hikes will be an opportunity to help the Wolfram Syndrome Association. The founder and president of this association, Nolwen Le Floch, has directly faced this “rare genetic disease” and little known, one of her children being affected.
About sixty cases in France
January 12, 2005. This date will remain forever engraved in the memory of the mother of the family. “It’s the day our lives changed,” she explains. Already being followed for type 1 diabetes, his son had, that day, an appointment with an ophthalmologist for what was supposed to be just a routine visit.
But, the diagnosis falls. The young man has Wolfram syndrome, like sixty other people in France. According to a surgeon met by the family, there is little hope given the lack of existing treatments. “The ground has collapsed under our feet,” admits Nolwen Le Floch. But, convinced that she can do things, she spends sleepless nights researching this disease.
What is Wolfram Syndrome?
A rare genetic disease, Wolfram syndrome is a neurodegenerative pathology. Affected individuals are born healthy before the various clinical manifestations appear. According to the Haute Autorité de Santé, “this disease is characterized by association
Insulin-dependent diabetes and optic atrophy, both early-onset,
more often before the second decade.
Funding for clinical trials
On July 25, 2007, families of sufferers came together to give birth to the Wolfram Syndrome Association. After organizing the first congress on this disease thanks to the AFM Téléthon in 2009, the association has since then carried out several actions. This notably resulted in the funding of a first research program in 2012.
After funding a first clinical trial in 2019, the association considered a second one in 2021. But funding a clinical trial is difficult. “The AudioWolf program costs €300,000 over three years,” announces Nolwen Le Floch. If it can rely on donations from associations and individuals, Nolwen Le Floch can only be satisfied with the support of Roc Loisirs. Because yes, she is determined not to let go.
As long as there is no medicine, I feel like I haven’t done anything.
Support for the Eugène Marquis Center
This day of October 26 will also be an opportunity for Roc Loisirs to mobilize for the Eugène Marquis center in Rennes. Backed by an almost 20-year partnership, the Morbihan association will once again mobilize all its energy to “help the cancer center to advance medical research. »
The money raised should make it possible to improve the comfort of breast cancer patients. This may result in purchasing a virtual reality headset for minor surgery or audio headsets to allow patients to escape before going to the operating room or during hospitalization.
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