Tight: sticks to multiple people to meet an obstacle in complete safety. “This requires trust, solidarity and support…as in the fight against Charcot’s disease”, Explain Syria. In February, the Haute-Savoie resident created the “Cordée de amis” association, in order to publicize and raise funds to fund research against this neurodegenerative disease, which her mother suffers from.
Also known as ALS (amyotrophic lateral sclerosis), it affects 500,000 people worldwide, including 30,000 French. According to professionals, it is one of the most common rare diseases. Incurable and always fatal, it gradually leads to complete paralysis that leaves people captive to their bodies, unable to walk, speak, or even swallow. The life expectancy of patients is, in general, three to five years, with great suffering.
Incurable disease
Four people die every day in France from amyotrophic lateral sclerosis, and five others see their lives change when the diagnosis is announced. For Syria, the world collapses on November 5, 2021. Her mother, Genevieve, 54, is hospitalized with difficulty speaking and swallowing. Wholesale falls very quickly. “We thought it couldn’t be that. A rare disease that only happens to others.”This 29-year-old mum remembers. However, Surya had already heard about this disease: with her husband, they knew nine people infected with it. Even one of the village’s neighbors died of it eight years ago. This disease is not rare and will remain so if we do not talk about it, “ She rebelled.
A few months before the announcement, this enthusiast had put a mountaineering enthusiast up to Mont Blanc on her agenda to celebrate her 30th birthday. A tribute, in a way, to his parents who climbed him for their honeymoon on July 31, 1991. Once the diagnosis is made, this personal project becomes an opportunity to raise awareness of this disease. “Today there is no cure and no hope, hardly trust. I know I’m going to lose my mother in the next few years. »
7000 euros have already been collected
By documenting himself, Surya realizes above all that it is mainly associations that fund research, such as Arsla. Thus, with this expedition to the surface of Europe, it intends to take research to the top. “Everything stuck, like the definition of a tight party and the difficulty of an expedition — like the daily lives of patients and their families — or the weight of a backpack — like the role the assistants played.” On this climb, scheduled for July 8 and 9, she will also be accompanied by Frederick, who lost his father to the same disease. All donations will be made to Arsala and will already exceed 7,000 euros. Delight for Syria: “I write the names of all the donors on the ice axe. It’s my way of taking them upstairs with me.”
On the occasion of World Amyotrophic Lateral Sclerosis Day, June 21, Arsla is organizing several activities across France to draw attention to the disease. Since the beginning of the month, the association has been carrying out the operation “June Fragments, A Month to Open Our Eyes on ALS”. In March 2022, she also made an appeal to Brigitte Macron, in which she confirmed that in Europe more than 13,000 new cases of amyotrophic lateral sclerosis are diagnosed each year, compared to 11,000 cases of multiple sclerosis, a disease known to all.
