Shards of June or how to raise awareness of Charcot’s disease

Amyotrophic lateral sclerosis is a serious neurodegenerative disease. It affects the motor neurons and leads to a progressive disability of the person affected. In France, five new cases are diagnosed, i.e. 2000 per year, with a very low life expectancy from then on, on average three to five years.

Amyotrophic lateral sclerosis, a disease that can affect anyone

In addition to this grim prognosis, the Association for ALS Research estimates that the number of patients is likely to increase by 20% by 2040. Remember that Charcot’s disease can affect anyone and that the individual risk is one in 300. To make the general public more aware of this serious but still little-known pathology, ARSLA is launching a new edition of “June Shards, a month to challenge ALS”.

Key events for this second edition of national ALS awareness

For this campaign, ARSLA therefore invites you to run, walk or ride to support the sick and their loved ones, from June 1 to 21.

“As a family, alone, with colleagues or friends, you are all invited to join “Défie la ALS” the ARSLA connected race. Everyone can set a goal in kilometers or euros and thus reach €100,000 in donations for research! You have until June 21 to register! June 21 is a strong date because it is the international day of the fight against ALS “ recalls the press release. Other events will take place in June throughout France: concerts, solidarity walks, challenges to achieve…

A second edition supported by different personalities

To spread its message, ARSLA can count on the support of personalities such as Denis Brogniart, Marina Carrère d’Encausse, Pone, Malika Ménard, Rayane Bensetti…

It also echoes the film by Olivier Goy, ambassador of this edition, whose film on Charcot’s disease, Invincible Summer, was released in theaters on May 31.

Léah, figure of Shards of June

For this second edition of ARSLA’s national awareness campaign “June Bursts, a month to challenge ALS”, Leah Stavenhagen (author of I would like to dance again) and her husband Hugo embody the fight of people with Charcot’s disease.

Leah, figure of Shards of June, a young woman of 30 experienced the announcement of her illness like a real tsunami. Although she initially wanted to ignore reality, lightning fell on her head only a few months after the diagnosis, when she was only 25 years old. Cut off from the recklessness of her youth, Leah speaks out and calls policy makers to action. She gave us her testimony during a video interview to rediscover.