"Beating Lysosomal Diseases" by Anne LEBARBENCHON
Through this “column”, we wish to give every ACT-ON GROUP employee the opportunity to share a personal commitment or a humanitarian and supportive contribution - aimed at helping the most vulnerable, protecting the planet or championing any other cause close to their heart.
Nine months ago, Anne LEBARBENCHON shared the story of her son Thomas and her commitment to the association "Beating Lysosomal Diseases" (VML in French).
With Christmas on the horizon, VML is organizing its “Lysolidarité” drive to fund research and support families affected by these diseases.
By ordering chocolates, sweets and local products - before October 26 - you can treat your loved ones while making a meaningful contribution!
Read Anne’s story and browse the “Lysolidarité” catalog below…
"In 2001, my son Thomas, not even three years old, was diagnosed with a lysosomal disease called Niemann-Pick Type C. That probably doesn’t ring a bell? That’s normal. It didn’t mean anything to me, either, when the news broke.
Lysosomes are the “waste treatment plants” of our cells. When they malfunction due to genetic mutations, waste cannot be broken down. This leads to about fifty rare, still poorly understood diseases, mostly affecting children, who then develop multiple disabilities.
My ex-husband and I were devastated when we got the diagnosis. Naturally, our first step was to search online, which is how we discovered the association “Vaincre les Maladies Lysosomales” (VML).
Founded in 1990, it has three missions: advancing research, raising awareness of lysosomal diseases - both among the general public and healthcare professionals - and supporting families.
To accomplish these missions, VML launched what’s now known as “Lysolidarité,” initially called “Opération Chocolat.” The concept is simple: since everyone loves chocolate and buys it for Christmas, VML offers boxes of Belgian and French chocolates at affordable prices in exchange for a donation.
Today, 60-70% of its funding comes from these annual sales. This funding goes toward clinical research on lysosomal diseases and the development of treatments. Thomas’s condition remains incurable, but for others, VML’s support has led to discovering treatments that enable children to reach adulthood.
Thanks to these donations, multidisciplinary consultation days are regularly organized in hospitals. These comprehensive health check-ups save families a tremendous amount of time and energy.
Moreover, VML helps families find respite by organizing stays at vacation centers. Children are looked after in a medically secure environment, giving parents and relatives the chance to recharge. We benefited from these stays for three consecutive years and trusted the caregivers completely with Thomas’s well-being.
VML supported us day in and day out. We felt less alone facing the disease, and we built very strong connections with people who shared our experience - individuals who have become close friends. It’s a cliché, but “coming together” truly made us stronger.
It was only natural for me to become a “point of contact” for “Lysolidarité.” Essentially, that means spreading the word about the drive, taking orders in October, and then distributing chocolate boxes a few days before Christmas. I made that decision in 2005, shortly before Thomas passed away.
Losing your child is an immeasurable, indescribable pain. You also feel guilt upon learning you carry the genetic mutation and have passed it on. Still, I never reconsidered my decision.
Talking about Thomas and supporting VML are therapeutic for me. I can’t give up, and it helps me “bounce back.”
Promoting the campaign is always a challenge, but it’s heartening to see how loyal donors have become - both personally and professionally at ACT-ON GROUP.
With the support of our HR Director, Erell SADOWSKI, I found the courage to discuss “Opération Chocolat” during a Works Council (CSE) meeting, where I’m an elected representative. Our president, Philippe FERRY, was touched by my commitment and made a substantial donation to the association. It moved me greatly, and I thank them.
Every gesture, every donation, truly makes a difference in the lives of families affected by lysosomal diseases. So I can only encourage you to join this chain of solidarity. Next year, as you plan your Christmas shopping, remember “Opération Chocolat”."
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