Report from the 20 June 2023
THE PARIS OPERA AND THE ARSLA, TOGETHER FOR 21 JUNE 2023.
The Premiere of Carolyn Carlson’s ballet Signes, on 21 June 2023, is dedicated to all the people affected by Charcot’s disease.
On the occasion of the Global Amyotrophic lateral sclerosis (ALS) Awareness Day, celebrated on 21 June, the ARSLA and the Paris Opera announce their collaboration for the Premiere of Carolyn Carlson’s ballet Signes, presented at the Bastille Opera until 16 July.
The Paris Opera is dedicating this series of performances to the association and to the benefit of all those suffering from Charcot's disease.
Our relationship to our body is essential, whether we are a performer or a person affected by a disease: to experiment and convey, to prevent suffering and survive. Knowing this dichotomy and to end this fatality, a bridge between the Paris Opera and the association takes on its full meaning. This global day of recognition of ALS/MND will also mark the culmination of the national awareness campaign launched by ARSLA "June bursts, a month to open our eyes to ALS". This campaign exists to make the voices of people affected by ALS and their families heard, to raise awareness among the general public and the political world.
At the end of the performance, the ARSLA and its guests will be welcomed to discuss with the Paris Opera Director, Alexander Neef, choreographer Carolyn Carlson, and the dancers and artists of the Ballet and the Opera.
“The Paris Opera wishes to bring its support to the Association for ALS Research during this Global ALS Awareness Day on 21 June 2023. The ARSLA and its guests are invited to the Premiere of the ballet Signes at the Bastille Opera, and then welcomed at the end of the performance to meet our artistic team. I think it's crucial that the Paris Opera should help to highlight ARSLA, an association promoting research and support for people suffering from the disease, and I'd like to thank the Ballet and every Opera team for their efforts and dedication. The ballet Signes was born from painter Olivier Debré’s meditation on smile and its mysteries.
May this ballet, with its influences of painting, music and dance, bring a smile to the faces of the audience on 21 June, and during all the other performances dedicated to people affected by the disease.”
— Alexander Neef, Paris Opera Director.
Marina Carrère d’Encausse, ambassador of the ALS awareness, Olivier Goy, founder of October, whose film Invincible été was released in cinemas on 31 May, Leah Stavenhagen, the leading figure in this month's campaign to raise awareness of Charcot's disease, and many other people involved with ARSLA will be present at the Premiere.
“I've joined forces with ARSLA to talk about this disease and raise public awareness. Particularly to show that it doesn't just affect the elderly. Research is not progressing fast enough, and we need a massive mobilisation. We, the people affected by Charcot's disease, don't have time to wait.”
— Leah Stavenhagen
I'd like to dance again is the title of the book written by Leah Stavenhagen, who was diagnosed at the age of 26.
“I am an ambassador for ARSLA because there is an urgent need to act. French research, the only hope for future generations, is lagging behind. We need to raise public awareness so that our politicians face this issue. We are - or will be - all concerned, this fight is vital!”
— Olivier Goy
The ARSLA ( Association for Amyotrophic Lateral Sclerosis Research )
Since 1985, the ARSLA (Association for Amyotrophic Lateral Sclerosis Research) supports people waiting for treatment and is involved in a wide range of initiatives to promote care, defend fundamental rights and promote French excellence in medical research.
Key figures:- 5 new cases and 5 deaths per day in France,
- 3 to 5 years of life expectancy after diagnosis,
- a 20% expected increase in the number of people suffering from the disease by 2040,
- 2000 people diagnosed per year, just as many as for Parkinson's disease, and more than for multiple sclerosis (MS).
- 1/300 is the lifetime risk ratio of developing ALS for each person,
- Charcot disease can affect anyone, whether young or old, with no particular predisposition.