Portrait- Charcot’s disease entered David’s life in 2017. He, along with his wife Valerie, is mobilizing politicians, researchers and investors to improve treatments for the most common rare diseases.
Although the first round of the presidential election is imminent, health is at the top of the subject, which the French consider to be a priority, including the issue of disability. If the Covid-19 crisis isn’t a stranger to it, this question resonates especially with David and Valérie Sagnier. For them, there is an urgency: it’s just living. David, 53, three children, was diagnosed with Charcot’s disease only five years ago in April 2017. After an average of 3-5 years of evolution, it is now an incurable and deadly disease.
The couple, in two groups, have launched a petition to Emmanuel Macron to improve the search for new treatments for the most common rare diseases. This affects nearly 7,000 patients in France. The petition has already collected nearly 93,000 signatures. A unique symposium was also held on March 17th.
Also known as ALS, in the case of “Amyotrophic Lateral Sclerosis,” this neurodegenerative disease gradually affects neurons, causing weakness and paralysis. In most cases, respiratory muscle attacks cause the patient’s death. “The illness has accelerated significantly since September 2021. I used to have no respiratory problems and used my legs. Only my arms, hands and neck were paralyzed,” he said., David says. His mischievous smile sitting in his wheelchair will almost forget the striking gray tube of breathing aid. “Unfortunately, I wore the best shirt and went to the beauty salon.”He jokes, because the internet connection interferes with the interview via Skype.
On his side, his wife Valerie hugs him and rejuvenates during a cold morning coffee and lunch preparation. Behind the bay window is a garden, and a short distance away you can imagine the wild landscape of Morbihan Bay. Nothing destined this couple of Bourjois’ assets in Paris-she is a lawyer at Paris Bar and he is a former associate director of JP Morgan Investment Bank in London-slow down this life by the sea. I spent time with.
Sailing around the world
And still. The irony of fate-or the wink of fate? -Valery, David and his granddaughter (8 years old at the time) had already changed their tack in 2016. That year, a small family went on a sailing trip around the world. After working for JP Morgan between London, New York and Paris for 16 years, David created his own IT company, trading room trading software and sold it to Americans in 2014.Freed from him “Obligation to society”He talks to us sparingly, he buys a yacht, trains with Valerie in navigation, and carries his wife and children to cross the Atlantic Ocean. “We liked this poetic way of moving, pushed by the wind and swells. The idea was to slow down to leave this hellish whirlwind.He confesses.
They don’t know that yet, but during this “pause” in this enthusiastic life, the beginning of a 180 ° rotation appears, as eternity to taste every second towards a weightless life. It can be counted. Sagnier rests for a year and sails along the coasts of Brittany, Spain and Portugal before arriving in the Caribbean and the Grenadines. However, one day in March 2017, David was unable to wrap the mooring line. Carrying a water pack can be very difficult. The muscles in his arms seem to have melted. After that, the couple consults in Martinique. Worried, doctors advise them to return to Paris urgently. After some tests and electromyography (EMG), the diagnosis fails. “They said they wouldn’t do anything to me, they could only accompany me, I could live for two years, maybe three years.”Breathe David.
“But I wanted to fight”, He continues. Another world tour begins for the couple. In the United States, David meets ALS spawner Merit Cudkowicz at Massachusetts General Hospital in Boston. He flew to Israel to meet a biogenetic expert at the Weizmann Institute of Science. He is suffering from an electric shock in Italy. He spends eight weeks in Sri Lanka learning about Ayurvedic medicine. He tests CBD. acupuncture. He meets a druid who magnetizes in the mountains. South African guru. “We were all ready”, Today I smile at Valerie. Everything you face in this storm.
Like the ocean, it wasn’t the problem of tame the elements, but rather the problem of tame them. “I thought it was better to enjoy life than to waste time running around the four corners of the globe.”David says. “The best way to fight illness was to be happy with the illness by refocusing on the work of the interior.” The couple leaves Paris and settles in Vannes. The first intuition to slow down is certain. Time is no longer money, it is an essential need.
“We changed our lives in a radical way. Our 13-year-old daughter became a caregiver. As few as possible, but when I had to leave, he I brush my teeth and administer medicine from time to time. Five years later, I realized that it was no longer rational to continue working.Valerie says.
An unprecedented symposium that brings together patients, doctors, pharmaceutical companies and investors
A new rhythm that does not affect the fighting nature of Sagnier. Are there any more complaints in court? Valerie appeals to politicians, researchers and journalists. Failure to tame the market, David helps him canvas health innovation entrepreneurs and investors.
Valerie wrote to the President of the Republic to encourage him to: Thanks to the recovery plan announced by Emmanuel Macron in February 2021 in the context of Covid-19, which is to support biotechnology in particular. Write “Remember your brain” A researcher who went abroad and restored resources to the French pharmaceutical industry.
A year later, the letter takes the form of a petition relating to two patient groups and is new, such as promoting compassionate access to experimental treatment (AAC) for patients who are not subject to treatment trials. I have a suggestion. Or develop a program that brings together patient data and research from around the world. “Only French laboratories are not interested in degenerative diseases, and ALS is the most common rare disease. It also affects young people and people die from it. Why is France doing nothing?Frustrating Valerie.
But there is no doubt that we expect everything from the nation. Meanwhile, Valerie met with Franck Mouthon, president of France Biotech, a federation of health innovation entrepreneurs, and Theranexus, a biopharmacy company developing drug candidates for the treatment of nervous system disorders. .. Together, they imagine the day of a conference in France dedicated to motor neuron diseases (motor neurons) such as ALS.
After a year of work, this unprecedented online symposium, which brings together patients, doctors, researchers and entrepreneurs, began on March 17th. Participants include ARSLA (the main association of ALS patients), the European Medicines Agency, ANSM, representatives of the French pharmaceutical company AB Science, American Amylix (among others), and major neurology in ALS research such as American Merit. Includes doctors. Cudkowicz, Angela Genge of Canada, or Professor Claude Desnuelle of France.
A fruitful collaboration that gave Valerie and David hope. And the latter is not going to stop there. The following objectives: Set up a training webinar (online conference) for patients, caregivers, and researchers.As Valerie says, a couple’s insatiable quest for hope “Fight every day”..