Four families from the association had the pleasure of taking part in the Élysée Palace Christmas on 11 December in Paris.

Every year, the Élysée Palace invites several hundred children to take part in a festive and convivial event. This year’s guests included Arthur, Damon, Malone, Maxence and Noam, all of whom have leukodystrophy. Accompanied by their parents and our President Crystelle Cottart, they were welcomed by a Republican Guard brass band in the courtyard of the Élysée Palace.

The families first had the opportunity to have their photo taken with their favourite characters such as Minnie, Olaf, Spider-Man and Stitch. Then it was time for the Paradis Latin dancers! Created by choreographer Kamel Ouali for all ages from 3 upwards, ‘Mon Premier Cabaret’ transported young and old alike into a fantasy world populated by superheroes, benevolent witches and princesses. The show ended with the traditional visit from Father Christmas.

The families were then able to exchange a few words with the President of the Republic and his wife and take a few souvenir photos. To round off the day, the children were invited to enjoy a snack before receiving a gift before their departure.

Everyone left with stars in their eyes and precious memories in their heads.

We warmly thank Emmanuel Macron for his invitation, and his wife Brigitte Macron for her support for our fight since 2016.

Families still out in force!

Now an unmissable event in the life of the association, the ELA family weekend took place from August 23 to 26 at Center Parcs Les Hauts de Bruyères in Sologne. 138 families, or over 800 people, turned out for this thirtieth edition, which featured a host of new features!

A program and activities for everyone

Smiles were all around as the families arrived at the welcome stand. Many had come from far and wide to take part in this stay! After collecting everything they needed for the weekend, they had a chance to explore the renovated cottages before enjoying a convivial meal at the Experience Factory.

The weekend got off to a flying start on Saturday morning at the plenary session. While the older guests discovered the activities, speakers and personalities who would be accompanying us over the weekend, the younger ones enjoyed a variety of workshops, supervised by Center Parcs teams: painting, board games and face painting. The hairdressing workshop, run by Coralie, an ELA family, which was a new feature last year, was once again a great success!

After the meal, the Mini Disco turned up the heat at the Experience Factory! Families, godmothers and godfathers danced and sang along to the latest hits and classics. A great start to the Saturday afternoon activities. As usual, families were spoilt for choice: pony riding, adapted karate, handisport, “wheelchair technique” dance, photo studio, Nordic walking and storytelling. Talking groups enabled people to discuss their daily lives with the disease.

At snack time, Humain Cool, Jérémy Charvet and Diane Dassigny provided a musical break that delighted young and old alike! At the boutique, families were able to take advantage of reduced prices on ELA products, and discover a new preview: embroidered zipped sweatshirts for children and adults!

On Sunday morning, the privatization of Aqua Mundo for people with disabilities and their families is a much-anticipated event. Accompanied by their godparents, they enjoy a moment of calm and relaxation, using equipment that is difficult to find in local establishments.
While some relaxed, others took advantage of the return of diving baptisms, renewed following last year’s success. 20 newcomers enjoyed an experience that will live long in their memories!

A weekend of relaxation and well-being

In the daily grind of illness, moments of relaxation are few and far between. The return of individual treatments for caregivers and patients was therefore eagerly awaited by families. A team of six socio-aestheticians (Alice, Aurore, Camille, Céline, Christine and Coralie) ensured 75 appointments, proof of the high demand for this service.

Aurore, an ELA family, and her friend Alexia, psychomotricians, offered a relaxation and sensory workshop. This special moment provided an opportunity to discuss ways of creating a bubble of well-being at home, and forget about the disease for a few moments.

A focus on sport

In this year marked by the Paris 2024 Olympic and Paralympic Games, the traditional treasure hunt offered to sibling children gave way to Olympiads. It was an opportunity to put their talents to the test in the hope of winning the ELA gold medal!

In addition to this novelty, families enjoyed the traditional sports activities, which are always a great success: Nordic walking, karate and self-defense, boccia and rifle shooting. On Sunday morning, after the swimming pool, the more courageous took part in a muscular awakening workshop before starting the traditional Prin’menade in tribute to our President Pascal Prin, who passed away in 2019.

Thanks to all!

The weekend was a resounding success, thanks to the loyal support of all those involved. Our warmest thanks go to the diving instructors from the Comité Handi Sub région Centre, dancer Pamela Bouthillier and her partner Laurent Besson, photographer André Dobosz, our team of socio-aestheticians, and the relatives of Béatrice Hess and Tiphaine Prin who led the handisport workshops.

Thanks also to the families who gave up their time to run the activities: Aurore Chrétien and Alexia Bruyère, Coralie Catherine, Frédéric Lukaszka, Kévin Patinaud.

Last but not least, thanks to our godmothers and godfathers who shared precious moments with the families: Pauline Bression (actor), Jérémy Charvet (actor and singer), Diane Dassigny (actor and singer), Humain Cool (singer), Marie-Hélène Lentini (actor), Dan Menasche (actor and singer), Fanny Peltier (athlete), Ella Philippe (actor) and Quentin Urban (kayaker).

Inès took part in the French Youth Handisport Sarbacane Championship on November 25 in Lievin, Pas-de-Calais.

Inès had previously performed brilliantly in a qualifying tournament organized by the Pyrénées Orientales Handisport Committee in April at her IEM.
Her results enabled her to be selected to represent the 96 best players in France at the Sarbacane Jeunes Handisport Championship.
The 96 players were divided into 2 categories: without gallows (48) and with gallows (48), Inès’ category.

On Wednesday 13th December, French President Emmanuel Macron and his wife Brigitte Macron welcomed several hundred children to the Élysée Palace for the traditional Christmas Tree lighting ceremony.

6 ELA children, accompanied by their parents, were invited to take part in this event. They were accompanied by Crystelle Cottart, President of ELA France.

The children could admire the Christmas decorations at the Élysée Palace and meet Disney characters Mickey, Minnie, Elsa and Anna, Spider-Man and Stitch for a photo session. Children could also have their faces painted and leave with balloon sculptures.

Then Clara, Axel, Candice, Julien, Héléna, Djebril, Lénie and Pierre from Star Academy 2023 left the château for the traditional concert. They performed “J’irai au bout de mes rêves”, several cartoon songs and “Petit Papa Noël”. It was at this point that Santa Claus appeared, much to the delight of the children. The day ended with a snack and the distribution of presents.

Children and grownups left with stars in their eyes at the end of this magical interlude.

We would like to warmly thank Emmanuel Macron for his invitation, and his wife Brigitte Macron, who has been supporting ELA and its fight against leukodystrophies since 2016.

From August 25^th to 28^th , ELA families gathered at Center Parcs in Sologne for the 29^th year. The trip brought together 141 families, or over 800 people, for a weekend of exchanges, respite and shared pleasures.

An eagerly awaited reunion

The families were delighted to meet up again on Friday August 25^th for the traditional annual event organized by ELA. Eager and happy to be together again, they were welcomed at 4PM by the ELA and Center Parcs teams. ELA families were then invited to share dinner together at the Experience Factory in a warm and festive atmosphere.
On Saturday morning, the welcome meeting, hosted by Crystelle Cottart and Nadia Cerise, provided an opportunity to reiterate the importance of this respite stay and to present the weekend’s program, as well as all the members of the Board of Directors, the members of the ELA team and the godmothers and godfathers present. The latter expressed to the families how happy they were to be at their side during this stay.
The families then took part in the traditional group photo to immortalize this 29th edition, before heading to the Experience Factory for lunch on Saturday, followed by the minidisco in the presence of the ELA godmothers and godfathers. Dancing, singing, laughing, smiling, applauding… the families took full advantage of this moment of joy and good humor.

Among the activities offered to families, the traditional rendez-vous

From Saturday to Sunday evening, there were à la carte activities for all: young and old, people with disabilities, parents, brothers and sisters, carers and companions.
• When dance and disability become one: dancer Pamela, accompanied by Laurent on cello, offered to share a time and a space to discover themselves through the eyes of dance. An enchanting moment for wheelchair users and the lucky spectators who witnessed these suspended moments.
• Nordic walking: Whether for beginners on Saturday or for the more experienced on Sunday, Nordic walking was once again a great way for families to share a friendly, sporty moment in a lush green setting.
• Pony rides: Pony rides were an opportunity for brothers and sisters, with or without disabilities, to share a common activity. Parents had the pleasure of accompanying their little riders for an unforgettable family moment.
• Adapted activities: Under the guidance of sports sponsors, young and old alike took part, with concentration but above all with joy and good humor, in adapted sports sessions such as rifle shooting, fencing, karate…
• The swimming pool: For people with disabilities, water provides a sense of well-being, as it promotes muscular relaxation, freedom of movement and reduces joint stiffness. Immersion in the water provides sensory stimulation, encouraging exchange, pleasure and play. To enable them to enjoy all these benefits, the Aqua Mundo was privatized on Sunday mornings from 8am to 10am. A moment of softness and relaxation guaranteed.
• The photo studio: During the weekend, families had the pleasure of posing in front of a professional photographer’s lens. A sure-fire souvenir of happy moments shared.
• Storytelling: What a joy to be told stories by our actor sponsors! A moment always appreciated by young and old alike.
• The Prin’menade: a tribute to Pascal Prin, ELA president who died in 2019: ELA families gathered in large numbers for a walk in memory of Pascal Prin, in the presence of his children Tiphaine and Antoine.

New this year

ELA families are a driving force behind proposals to enable everyone to share together, experiment and discover new activities. This year, for the first time, the following activities were organized:
• Hairdressing workshop: During the Saturday morning plenary session, the children took part in drawing, painting, board games and make-up workshops organized by the Center Parcs entertainment team. For the first time, a hairdressing workshop was organized by an ELA family. Strass and glitter were the order of the day, as were the stars in the eyes of the children, who were proud to be admired throughout the weekend.
• An exchange group for women/mothers with the disease: at the initiative of an ELA mother, a meeting was set up to enable women with the disease to exchange with others in the same situation, to share their experiences and everyday tips.
• “L’album de Familles d’ELA”: available throughout the weekend, “L’album de Familles d’ELA” enabled those who wished to do so to leave words, photos or drawings symbolizing their involvement and their fight against the disease, and to show their attachment to the great ELA family.
• First dive: On Sunday morning, 19 people, supervised by 7 diving instructors from the Comité régional Handi Sub région Centre, went to Aqua Mundo to discover diving. It was a unique experience, often far more impressive than they could have imagined.

Time for discussion

• First-time families: On Friday evening, families registered for the first time were welcomed by members of the Board of Directors and ELA teams. This was an opportunity to answer any questions the families might have and to inform them about the association and how the weekend would unfold.
• Discussion groups: Throughout the weekend, families took part in discussion groups led by ELA psychologist Marie-Claude Blondeau. These times of exchange designed for families living with the disease on a daily basis are an opportunity for them to get together in complete privacý to confide in each other, help each other, listen to each other and comfort each other. Bereaved families, loved ones of someone affected by leukodystrophy or patients, all are welcomed “with arms wide open” by Marie-Claude to share their daily lives, their difficulties, their joys and their sorrows.

Many thanks to you all!

Our sponsors led and took part in the weekend’s activities with, as always, a great deal of kindness and generosity. Dancing, minidisco, storytelling, fencing, musical breaks, pony trekking, handisport workshops… were all magical encounters with the families.
Our heartfelt thanks go to Gil Alma, comedian and humorist, Shemss Audat, Léa François and Éléonore Sarrazin, comedians, Fabian Wolfrom, comedian, PIHPOH, singer, Fanny Peltier, athlete specializing in sprint events, Béatrice Hess, multi-medal-winning handisport swimmer and Julien Mertine, Olympic fencing team champion at the Tokyo 2020 Olympic Games.

The ELA team, the members of the Board of Directors and our invaluable volunteers led activities such as the hairdressing workshop, the photo studio, the boutique, Nordic walking, handisport workshops, wheelchair dancing, first dive…
Many thanks to François and Chantal Dequen, respectively delegate-representative and administrator, all the diving instructors of the Comité régional Handi Sub région Centre (Pierre, Jérémy, Maurice, Aziadé, Éric, Olivier and Christophe), André Dobosz, professional photographer, Frédéric Lukaszka, ELA delegate-representative, Kevin Patinaud and Coralie Catherine, ELA families, Tiphaine Prin, adapted sports educator, as well as Pamela Bouthillier, dancer and Laurent Besson, cellist and percussionist.

See you next year!

5 ELA families shared an exceptional day at the 54th Salon International de l’Aéronautique et de l’Espace at Le Bourget Airport.

A day full of memories

Accompanied by ELA’s sponor Caroline Bourg, they had the privilege of being welcomed into the new fire station next to the control tower. After an impressive demonstration of how to use the fire hoses on the fire engines, the children were invited to become firefighters for a day by donning firefighters’ helmets!

ELA families had the chance to get up close to a Rafale and watch the pilot, concentrating on the ground, perform the actions he would later reproduce on board his aircraft. Afterwards, everyone was invited to wear earplugs as the Tigre helicopter approached! After all this excitement and a convivial lunch, the families were treated to superb demonstrations of aircraft in flight by various aircraft manufacturers.

The families testify

“Héloïse’s disability prevents us from doing many activities or makes them more difficult. Thanks to ELA, we are able to have extraordinary experiences, such as meeting the President of the Republic at the Élysée Palace for Christmas, or visiting the fire station at Le Bourget with an incredible airplane flight show. We felt really privileged because only ELA families were on the tarmac to see the show! Thank you to ELA for allowing us to have extraordinary experiences for our extra-ordinary children.”

“The Bourget show is great! I was there for the first time for me with my parents. I love firefighters and was very happy to be able to talk with them and see the trucks. The big truck with the water cannon really impressed me! The firemen were very friendly. My parents and I had a lot of fun watching the flying planes – I’ve never been so close to a helicopter! Thanks to ELA for organizing this outing and I hope to be invited next year.”

“Kenny and I were lucky enough to go to the Paris Air Show with other ELA families as well as our godmother, the very kind Caroline Bourg, thanks to an invitation from the Le Bourget airport firefighters and the French Air Force. We were welcomed into the fire station and were able to see different vehicles in action. The children were delighted to try on firefighter helmets. After lunch in the barracks, we made our way to the runways to admire the aircraft on display in the air and on the ground, which brought a sparkle to the eyes of Kenny, who has been an aviation fan ever since his brother set his sights on a career as a pilot in the Armée de l’Air. Thanks to ELA, we were lucky enough to have an enchanted interlude under a radiant sun.”

Many thanks to the management and the entire team at Paris-Le Bourget Airport, including the firefighters led by Éric Valls, for this magnificent day offered to ELA families!

On April 30th, seven families of ELA have been invited to attend the football match between the Stade Rennais Football Club (SRFC) and the Angers SCO at the Roazhon Park of Rennes.

SRFC, supporting ELA since 2005

The football club often puts ELA’s fight under the spotlight. Each year, the players go to schools to read ELA Dictation to students. More recently, the club gave the reward won for the LFP Celebration Week to ELA (read the article on page 21 of our review ELA infos 121).

A moment of respite for families

The SRCF staff invited seven families (namely about 30 people) to attend the meeting between Rennes and Angers inside the Roazhon Park stadium, home of the club, with Philippe Levillain, member of ELA council. This beautiful moment allowed to put aside, for some hours, the daily life with a leukodystrophy.

We warmly thank the SRFC for its fithful support to ELA, throughout the year and for 18 years.

President of Republic Emmanuel Macron and his wife Brigitte Macron have welcomed several hundreds of children for the traditional illumination of the Christmas tree on Wednesday December 7th 2022.

12 children of ELA participated to this event. They could admire the Christmas ornaments, meet Santa Claus and some Disney characters. They also had the privilege to attend a magic show from Vassili and Nathan, former participants of the show “France’s greatest talent”, followed by a private concert from the famous singer Kendji Girac.

This magical moment ended by a snack and presents distribution, during which families could exchange and have some pictures with Emmanuel and Brigitte Macron, and Kendji Girac as well.

Kids and adults left with the eyes full of stars and beautiful memories of this enchanted day.

The ELA Association warmly thanks Emmanuel Macron for his invitation, and his wife Brigitte for her support to the fight against leukodystrophies for more than five years.

Mathéo could have been cured with a gene therapy invented in France. He was denied treatment for commercial reasons.

To prevent this story from happening again, a mother of ELA calls out the French Ministers of Health and Research, as well as the Secretary General for Investment-France 2030 through a petition supported by the association.

Save children from being denied treatment for commercial reasons

My name is Élodie Jourdan. I am the mother of a little Mathéo, now 8 years old. My son was in great shape until he started vomiting repeatedly. After further examination, we learned that he was a carrier of leukodystrophy, an extremely serious neurodegenerative disease that can destroy the brain of a previously healthy child within months. In November 2020, an MRI scan revealed a small lesion in his brain. Mathéo has no symptoms yet, but this sign indicates that the that the disease is progressing. It must be stopped at all costs. There is no time to lose.

So, the doctors offered us a brand new treatment, a gene therapy transplant called “Skysona”, which can cure Mathéo.

A transplant is a heavy treatment. But gene therapy has demonstrated its effectiveness and advantages over a conventional transplant: no need for a compatible donor, no risk of rejection, a rapid return to normality after 6 weeks in hospital, and no lifelong post-operative treatment.

We did not hesitate. We did all the necessary tests, and then, eight days before starting the transplant process, we got the bad news: the American laboratory that owns the marketing rights suddenly decided to leave France and Europe and to refocus on the American market for “commercial” reasons.

Mathéo will not benefit from this gene therapy…

Neither will the other European young ones… This is all the more unacceptable as this innovation was born in France with substantial funding from the European Leukodystrophy Association (ELA) and public research.

The blow is hard, between disappointment and inconsolable tears.

In the absence of Skysona, the doctors offered us a classic transplant to inject Mathéo with cells from a compatible donor. It took place in October 2021, but alas, it was clear that the transplant had been rejected. A nightmare. A second transplant was performed at the end of March 2022. But Mathéo was fragile, and infections attacked his heart, his kidneys, his spleen, his lungs and his liver. Our little boy fought, despite losing sight in one eye.

At the end of October 2022, we learned that the disease was continuing to progress despite the transplant, with new brain lesions appearing. We continue to hope that the transplant will eventually stop it for good. We’re keeping our fingers crossed, there’s nothing else we can do…

• How can we not be indignant when we know that this treatment is no longer available in Europe, even though Mathéo should have benefited from it?
• How can we not be indignant when we know that other gene therapies for other genetic diseases that are just as expensive are funded?
• How can we not anticipate the rapid and predictable increase in innovative treatments for rare diseases?
• How can we not be indignant that children are being condemned to general indifference when an effective treatment is available?

I don’t want our painful story to happen to other children and other parents. It is for them that I have decided to launch this petition. It is for them that I ask you to sign it en masse. Together we can still make a difference.

I have asked François Braun, Minister of Health, Sylvie Retailleau, Minister of Research, and Bruno Bonnell, Secretary General for Investment-France 2030:
• to create a special fund of up to 10 million euros in the first quarter of 2023, to enable children with leukodystrophy who could benefit from Skysona to be treated in the USA. This amount will have to be renewed as long as a permanent solution on French or European territory has not taken over.
• to produce Skysona in France, either in consultation with the American laboratory or through an ex-officio licence that would allow a third party to produce it.

Please support massively this mother’s initiative by signing the petition and share it on the social networks.

An event full of emotions!

From 26 to 29 August, ELA families gathered at Center Parcs in Sologne for the 28th year. This stay brought together 130 families, i.e. 750 people, for a weekend of exchanges, respite and shared pleasure.

A special year, ELA celebrates its 30th anniversary!

On the occasion of the association’s 30th anniversary, the park, all decorated in ELA’s colours, brought together its customers and teams as well as ELA families in a great solidarity challenge with the “Mets tes baskets” application. The aim was to count as many steps as possible all together to support the fight against leukodystrophies. At the end of the weekend, 7,198,574 steps were taken by the 390 participants in the challenge!

We would like to thank David Vincent, director of the park, who, accompanied by his teams, presented a cheque for €2000 to ELA.

It was on Friday afternoon, under a sunny sky, that the families, impatient and happy to meet again, were welcomed by the ELA and Center Parcs teams.

In the evening, all were invited to the Experience Factory to share a dinner in a friendly atmosphere. During dessert, Crystelle Cottart, President of ELA, and Guy Alba, President of ELA International, took the floor to remind us of the importance of sticking together to beat leukodystrophies. The special “30 years of ELA” birthday cake was eaten to the tune of “Happy Birthday ELA” sung by our sponsors.

On Saturday morning, the welcome meeting, led by Crystelle Cottart and Nadia Cerise, was an opportunity to remind people of the importance of this respite stay and to present the weekend’s activities and new features. The sponsors present were able to tell the families how happy they were to be at their side during this stay. The families were then able to take part in the traditional group photo to immortalise this 28th edition.

Everyone then headed to the Experience Factory to share the Saturday lunch followed by the mini-disco in the presence of ELA’s sponsors. Dancing, singing, laughing, smiling, applauding… the families took full advantage of this festive and joyful occasion.

Workshops for everyone

From Saturday to Sunday evening, there were activities for everyone: children, adults, people with disabilities, parents, brothers and sisters, carers and companions.

Our sponsors led and participated in the weekend workshops with great kindness and generosity. Dancing, mini disco, storytelling, fencing, the musical break, the pony, the parasports workshop… were the occasion of magical encounters.

Heartfelt thanks to David Bàn, comedian and singer, Marie-Hélène Lentini and Alexandra Naoum, comediennes, Béatrice Hess, multi-medalist para swimmer and Julien Mertine, Olympic champion in the foil fencing team competition at the Tokyo 2020 Olympic Games.

The ELA team, the members of the Board of Directors and our precious volunteers led activities such as plantar reflexology, the photo studio, the shop, Nordic walking, parasports workshops, “wheelchair” dancing.

Many thanks to Chantal Dequen, administrator, André Dobosz, photographer, Frédéric Lukaszka, ELA delegate-representative, Kevin Patinaud, of the ELA family, Tiphaine Prin, adapted sports educator and Pamela Bouthillier, dancer.

The events finished on Monday, after a stay that allowed to make unforgettable memories.