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Nine months ago, Anne LEBARBENCHON shared the story of her son Thomas and her commitment to the association \"Beating Lysosomal Diseases\" (VML in French).<\/strong><\/p>\n\n\n\n With Christmas on the horizon, VML is organizing its \u201cLysolidarit\u00e9\u201d drive to fund research and support families affected by these diseases.<\/strong><\/p>\n\n\n\n By ordering chocolates, sweets and local products - before October 26 - you can treat your loved ones while making a meaningful contribution!<\/strong><\/p>\n\n\n\n \"In 2001, my son Thomas, not even three years old, was diagnosed with a lysosomal disease called Niemann-Pick Type C. That probably doesn\u2019t ring a bell? That\u2019s normal. It didn\u2019t mean anything to me, either, when the news broke.<\/em><\/p>\n\n\n\n Lysosomes are the \u201cwaste treatment plants\u201d 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 \u201cVaincre les Maladies Lysosomales\u201d (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.<\/em><\/p>\n\n\n\n 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\u2019s condition remains incurable, but for others, VML\u2019s support has led to discovering treatments that enable children to reach adulthood.<\/em><\/p>\n\n\n\n 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\u2019s well-being.<\/em><\/p>\n\n\n\nRead Anne\u2019s story and browse the \u201cLysolidarit\u00e9\u201d catalog below\u2026<\/strong><\/h5>\n\n\n\n
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To accomplish these missions, VML launched what\u2019s now known as \u201cLysolidarit\u00e9,\u201d initially called \u201cOp\u00e9ration Chocolat.\u201d 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.
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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.
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