While the first round of the presidential election is imminent, health is at the top of the subjects considered a priority by the French - including the question of disability.
If the Covid-19 crisis is no stranger to it, this question resonates particularly for David and Valérie Sagnier.
For them, there is urgency: that of simply living.
David, 53, with three children, was diagnosed with Charcot's disease just five years ago, in April 2017. A disease that is currently incurable, and with a fatal outcome, after three to five years of evolution on average.
Read alsoCharcot's disease: the life lesson of Jean d'Artigues
With two collectives, the couple launched a petition, addressed to Emmanuel Macron, to improve the search for new treatments against the most common rare disease - it affects nearly 7,000 patients in France.
The petition has already collected nearly 93,000 signatures.
A unique symposium was also organized on March 17th.
Also called ALS, for "amyotrophic lateral sclerosis", this neurodegenerative disease gradually affects the neurons and leads to muscle weakness, then paralysis.
Most often, the attack of the respiratory muscles causes the death of the patients.
“The disease has accelerated significantly since September 2021. Before, I had no respiratory problem and I had the use of my legs.
I was only paralyzed in my arms, hands and neck
,” says David.
Sitting in his wheelchair, his mischievous smile would almost make you forget the imposing gray tubes of the respiratory assistance.
“Too bad, I had put on my best shirt and went to the hairdresser,”
he jokes as the Internet connection disrupts our interview via Skype.
At his side, his wife Valérie embraces him, before activating between the morning coffee which is cooling and the preparation of lunch.
Behind a bay window, you can make out a garden and, a little further on, you can imagine the wild landscapes of the Gulf of Morbihan taking shape.
Nothing predestined this couple of Parisian bourgeois assets - she, a lawyer at the Paris Bar, he, a former associate director at the JPMorgan investment bank in London - for this life in slow motion, by the sea.
Sailing around the world
And yet.
Irony of fate - or wink of fate?
- Valérie, David and their granddaughter - eight years old at the time - had already changed tack in 2016. That year, the little family cast off for a round-the-world sailing trip.
After working between London, New York and Paris for 16 years for JPMorgan, David created his own IT company, software for trading in trading rooms, which he sold in 2014 to Americans.
Freed from his
“obligations vis-à-vis society”
, he tells us modestly, he buys a sailboat, trains with Valérie in navigation and then embarks wife and child for the crossing of the Atlantic.
“We liked this poetic way of moving, pushed by the wind and the swell.
The idea was to slow down, to leave this infernal whirlwind,”
he confides.
Read alsoIn Lorient, a regatta with the Éric Tabarly association to fight against Charcot's disease
They don't know it yet, but it is during this "pause" in this frenetic life that the beginnings of a 180° turn appear, towards a life in weightlessness, where every second counts as an eternity to savor. .
For a year of respite, the Sagniers sail along the coasts of Brittany, Spain and Portugal, before reaching the Caribbean and the Grenadines islands.
But one day in March 2017, David can no longer wrap a mooring line.
Carrying water packs becomes unusually difficult.
In both of his arms, the muscles seem to have melted away.
The couple then consults in Martinique.
Worried, the doctor advises them to return to Paris urgently.
A few tests and an electromyogram (EMG) later, the diagnosis falls, implacable:
“They told me that there was nothing to do, that they could only accompany me, that I had two, maybe three years to live”
, breathes David.
"But I wanted to fight
," he continues.
Another world tour begins for the couple.
In the United States, David meets Merit Cudkowicz, an ALS spawner at Massachusetts General Hospital in Boston.
He flew to Israel to meet a biogenetics specialist at the Weizmann Institute.
Suffers electroshock in Italy.
Spends eight weeks in Sri Lanka learning about Ayurvedic medicine.
Test the CBD.
Acupuncture.
Meeting magnetizing druids in the mountains.
Gurus in South Africa.
“We were ready for anything
,” smiles Valérie today.
Everything to face this storm.
As at sea, it was not a question of taming the elements, but rather of taming them.
“I ended up understanding that it was better to try to enjoy life, rather than wasting time running around the four corners of the planet
,” says David.
"That the best way to fight against the disease was to be able to be happy with the disease, by refocusing on an interior work".
The couple leaves Paris and settles in Vannes.
The first intuition, to slow down, has turned into certainty.
Time is no longer money, it is a vital need.
“We changed our lives in a radical way. Our 13-year-old daughter has become a caregiver. As little as possible, but when I have to be away, he sometimes brushes his teeth, or administers his medication. After five years, I realized that it was no longer reasonable to continue working
,” says Valérie.
An unprecedented symposium bringing together patients, doctors, pharmaceutical companies and investors
A new rhythm which does not affect the combativeness of the Sagniers.
No more pleadings in court?
Valérie will plead with politicians, researchers and journalists.
Failing to tame the markets, David helps him canvass health innovation entrepreneurs and investors.
Thanks to the recovery plan announced by Emmanuel Macron in February 2021 in the context of Covid-19, supposed in particular to support biotechnologies, Valérie writes to the President of the Republic to encourage him to
"recall the brains"
of researchers who have gone to the abroad and to restore resources to the French pharmaceutical industry.
Read alsoCharcot's disease, first concrete results against the disease.
ARSLA continues the fight!
A year later, this letter takes the form of a petition associated with two patient groups, with new proposals, such as facilitating compassionate access authorizations (AAC) to experimental treatments for patients not eligible for therapeutic trials. .
Or develop a program to compile patient data and research around the world.
“Only laboratories in France are not interested in degenerative diseases, and ALS is the most common rare disease.
It also affects young people, people die of it.
Why is France not doing anything?
, gets annoyed Valerie.
There is no question, however, of expecting everything from the State.
In the meantime, Valérie met Franck Mouthon, president of France Biotech, a federation of health innovation entrepreneurs, and of Theranexus, a biopharmaceutical company developing drug candidates for the treatment of diseases of the nervous system.
Together, they imagine an unprecedented symposium in France, dedicated to motor neuron diseases (motor neurons) such as ALS.
After a year of work, this unique online symposium, bringing together patients, doctors, researchers and entrepreneurs, was launched on March 17.
Among the participants, the ARSLA (main association of ALS patients), representatives of the European Medicines Agency, the ANSM, the French pharmaceutical companies AB Science and the American Amylix (among others), leading neurologists in research on ALS such as the American Merit Cudkowicz, the Canadian Angela Genge or the French professor Claude Desnuelle.
A fruitful collaboration that gave hope to Valérie and David.
And the latter does not intend to stop there.
Next objective: set up a webinar (online conference) for patients, caregivers and researchers.
An insatiable quest for hope by a couple who, as Valérie says,
"fight every day"
.