Stéphanie Fouquet is a fighter just like her husband, who died on July 15, at just 36 years old, after eighteen months of fighting against illness. The diagnosis came on December 10, 2021. Maxime knew he was doomed. Amyotrophic lateral sclerosis (ALS or Charcot disease) is irreversible, but he wanted to fight and publicize his pathology. It is with this goal that the Stop Charcot Disease association was created in 2022, in Thionville. The Stop Charcot Disease petition carried by a group of patients has recorded 120,000 signatures including those of elected officials, deputies and senators. Since then, different actions between football matches and races have been launched to raise funds.
A merger to continue the fight
Everything stopped two months ago. A little before his death. At least in appearance, because Maxime knew that after him there would be a sequel: for his children and his loved ones. “He had everything planned: he told me that he wanted to see his association and that of Nathalie de Distroff get closer. From now on, we will talk about the Children of Slaf and Stop Charcot Disease,” announces Stéphanie. A logical continuation according to her: “Nathalie supported us when we found out about Max. She provided us with equipment. Together, they advanced the handling of cases by the MDPH. »
A gala in Amnéville
Nathalie Bellisario created Les Enfants de la Slaf fifteen years ago. “But I have been involved with the disease for thirty years. In my family, ALS is genetic. » She knows she is spared, but she continues her actions for others, more and more numerous, younger and younger. Condemned by this terrible disease. “Currently, we are supporting 33 people in the Grand Est. Thanks to Maxime’s association, we were able to buy equipment and make our car available. From now on, the CHR directs families towards us, we are here to help. » On Thursday September 28, in Amnéville, a gala will be organized to raise funds for research. “We can still register. We have incredible prizes: stay at the Klauss, helicopter flight, guitar… people are very generous,” marvels Stéphanie, who keeps her head above water for Margaux and Robin, her children. “Maxime was named honorary president. It will continue to exist through our actions: gourmet walks, gala, Christmas tree sales, the SLA’vengers, underlines Nathalie. There is still so much to do to support the sick. » He could have been angry: why him, so young? “He raised awareness, he showed the urgency of this disease. »
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