{"id":48325,"date":"2025-04-29T05:33:41","date_gmt":"2025-04-29T09:33:41","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=48325"},"modified":"2025-05-03T12:13:08","modified_gmt":"2025-05-03T16:13:08","slug":"fundraising-with-heart-celebrating-volunteer-champions","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/fundraising-with-heart-celebrating-volunteer-champions\/","title":{"rendered":"Une collecte de fonds qui vient du c\u0153ur : hommage aux champions du b\u00e9n\u00e9volat"},"content":{"rendered":"

Raising awareness for a rare disease like\u00a0Maladie d'Erdheim-Chester (ECD)<\/strong>\u00a0takes more than facts and figures\u2014it takes people. It takes passion, imagination, and community spirit. And during\u00a0Volunteer Month<\/strong>, we\u2019re thrilled to recognize a very special kind of volunteer: the fundraisers who turn everyday events into life-changing impact.<\/p>\n

\u00c0 la\u00a0Alliance mondiale contre la maladie d'Erdheim-Chester (ECDGA)<\/strong>, our mission depends on the generosity and creativity of those who believe in it. Whether it\u2019s a bake sale, a fitness challenge, or a game night with a purpose, every dollar raised by these volunteers helps fund research, support families, and expand outreach across the globe.<\/p>\n

Everyday Actions, Extraordinary Impact<\/h3>\n

What do yogurt, wine, pampered kitchens, and running shoes have in common? They\u2019ve all been used to support the fight against ECD. Our volunteer fundraisers have found meaningful and often fun ways to give back,\u00a0and the results are making a real difference.<\/p>\n

Some standout efforts include:<\/p>\n

    \n
  • Wine Survivor Game<\/strong>\u00a0\u2013 A friendly competition with bottles of wine at stake and support for ECDGA at the core.<\/li>\n
  • Culver\u2019s Yogurt Sales<\/strong>\u00a0\u2013 A local favorite turned into a sweet support system.<\/li>\n
  • Pampered Chef Fundraisers<\/strong>\u00a0\u2013 Cooking with purpose, where meals are made, memories\u00a0are made, and<\/em>\u00a0donations are made.<\/li>\n
  • Team Leaders in the Fun Run\/Walk\/Roll<\/strong>\u00a0\u2013 Moving for a cause, and bringing communities together along the way.<\/li>\n
  • Facebook Birthday Fundraisers<\/strong>\u00a0\u2013 Celebrate your special day by encouraging friends to support ECDGA, turning your birthday into a meaningful opportunity to make a difference.<\/li>\n
  • Friends & Family Letters<\/strong>\u00a0\u2013 Share your ECDGA story with those closest to you to raise awareness, spark meaningful conversations, and invite their support.<\/li>\n<\/ul>\n

    These events may seem small on the surface, but collectively, they build momentum. They raise awareness in new circles, draw in first-time supporters, and create an environment where fundraising feels less like a task and more like a celebration of hope.<\/p>\n

    Volunteers Who Go the Extra Mile<\/h3>\n

    It\u2019s not just about the money raised\u2014it\u2019s about the\u00a0message<\/strong>. Volunteer fundraisers remind the world that ECD isn\u2019t invisible. Every t-shirt sold, step walked, and recipe shared is a powerful act of advocacy.<\/p>\n

    Many of these fundraisers are organized by patients, caregivers, or friends of someone living with ECD. Often, they happen quietly\u2014behind the scenes, in local communities, or online among friends. But their effect ripples far and wide, supporting everything from research grants to patient travel assistance to expanded educational tools.<\/p>\n

    And with our upcoming\u00a0May conference in Barcelona<\/strong>, the impact of these efforts will be visible in real time, from the resources available at the event to the programs supported by fundraiser dollars.<\/p>\n

    Why Their Efforts Matter So Much<\/h3>\n

    Because ECD is so rare, it doesn\u2019t benefit from large-scale fundraising machinery. We don\u2019t have hundreds of sponsored walks or annual telethons. What we\u00a0do<\/em>\u00a0have is something even more meaningful: a community that steps up with heart, initiative, and determination.<\/p>\n

    Volunteer-led fundraisers have helped:<\/p>\n

      \n
    • Launch research partnerships<\/li>\n
    • Improve virtual support platforms<\/li>\n
    • Provide resources to newly diagnosed patients<\/li>\n
    • Elevate ECD on the global rare disease stage<\/li>\n<\/ul>\n

      Their work fills the gaps where institutional funding hasn\u2019t yet reached\u2014and it ensures that no effort, no matter how small, is wasted.<\/p>\n

      Let\u2019s Keep the Momentum Going<\/h3>\n

      As we shine a light on these incredible volunteers, we also extend an open invitation:\u00a0you don\u2019t have to be a professional to make an impact.<\/strong>\u00a0Whether it\u2019s hosting a trivia night, selling handcrafted goods, or joining a local run with ECDGA in mind, every act of fundraising brings us one step closer to greater awareness, stronger support, and more research.<\/p>\n

      Let\u2019s continue building on this spirit as we prepare for\u00a0Barcelona 2025<\/strong>. The passion behind our volunteers will be on full display, reminding everyone that progress is powered by people.<\/p>\n

      Thank You, Fundraising Heroes<\/h3>\n

      To the organizers, donors, participants, and supporters: thank you for making hope tangible. Thank you for believing that a yogurt cup or a 5K could change lives. And thank you for proving, time and again, that when we act together, we go farther.<\/p>\n

      You are not just raising money\u2014you\u2019re raising awareness, building community, and showing the world what rare disease resilience looks like.<\/p>\n

      \n

      L'Alliance mondiale contre la maladie d'Erdheim-Chester (ECDGA) ne fournit ni conseils m\u00e9dicaux, ni diagnostics, ni traitements. L'ensemble du contenu est pr\u00e9sent\u00e9 \u00e0 titre purement informatif. Veuillez consulter un professionnel de sant\u00e9 pour toute question d'ordre m\u00e9dical.<\/em><\/p>","protected":false},"excerpt":{"rendered":"

      Raising awareness for a rare disease like\u00a0Erdheim-Chester Disease (ECD)\u00a0takes more than facts and figures\u2014it takes people. It takes passion, imagination, and community spirit. And during\u00a0Volunteer Month, we\u2019re thrilled to recognize […]<\/p>\n","protected":false},"author":20,"featured_media":48326,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[375,378,387,380,383,374,384,386,388,379,376,385,381,377,382],"class_list":["post-48325","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-ecdawareness","tag-ecdcommunity","tag-ecdga","tag-ecdsupport","tag-ecdvolunteer","tag-erdheimchesterdisease","tag-hopeforecd","tag-makerarevisible","tag-powerofvolunteers","tag-rarebutstrong","tag-raredisease","tag-supportraredisease","tag-tealandnavy","tag-volunteerforecd","tag-zebraribbon"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/48325","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=48325"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/48325\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/48326"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=48325"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=48325"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=48325"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}