{"id":292213,"date":"2017-06-27T16:44:20","date_gmt":"2017-06-27T20:44:20","guid":{"rendered":"https:\/\/theequity.ca\/?p=292213"},"modified":"2026-06-20T09:58:33","modified_gmt":"2026-06-20T13:58:33","slug":"des-golfeurs-selancent-pour-la-recherche-sur-la-cystinose","status":"publish","type":"post","link":"https:\/\/theequity.ca\/fr\/des-golfeurs-selancent-pour-la-recherche-sur-la-cystinose\/","title":{"rendered":"Des golfeurs s&rsquo;\u00e9lancent pour la recherche sur la cystinose"},"content":{"rendered":"<figure id=\"attachment_90276\" aria-describedby=\"caption-attachment-90276\" style=\"width: 300px\" class=\"wp-caption alignnone\"><img fetchpriority=\"high\" decoding=\"async\" class=\"wp-image-90276 size-medium\" src=\"https:\/\/web.archive.org\/web\/20170805005541\/https:\/\/theequity.ca\/wp-content\/uploads\/2017\/06\/06.28cyst_golf-300x200.jpg\" alt=\"\" width=\"300\" height=\"200\" \/><figcaption id=\"caption-attachment-90276\" class=\"wp-caption-text\">Le Club de golf Pontefract a accueilli un tournoi samedi dernier en appui \u00e0 la Cystinosis Research Foundation, recueillant plus de 5\u2009000\u2009$. MaryLynn Lepack, \u00e0 gauche, \u00e9tait l\u2019invit\u00e9e d\u2019honneur de la journ\u00e9e, car l\u2019argent amass\u00e9 par sa m\u00e8re Marthe Drolet, \u00e0 droite, et son \u00e9quipe financera, on l\u2019esp\u00e8re, un jour un rem\u00e8de contre la maladie.<\/figcaption><\/figure>\n<p>Donald Teuma-Castelletti<br \/>PONTEFRACT 24 juin 2017<br \/>Chaque fois qu\u2019une fillette de huit ans de Mansfield met le pied dehors, elle doit porter ses lunettes de soleil. Elle peut commencer \u00e0 vomir \u00e0 tout moment, elle est constamment \u00e0 l\u2019h\u00f4pital et en sort, et elle doit prendre un m\u00e9lange de m\u00e9dicaments en tout temps.<br \/>Pour MaryLynn Lepack, c\u2019est sa r\u00e9alit\u00e9 quotidienne. Atteinte de cystinose, une maladie g\u00e9n\u00e9tique et m\u00e9tabolique, son corps pr\u00e9sente une accumulation excessive de l\u2019acide amin\u00e9 cystine dans ses cellules. Cette maladie affecte et d\u00e9truit n\u00e9gativement tous les principaux organes du corps et n\u2019a pas de rem\u00e8de. <!--more--><\/p>\n<p>Cependant, sa famille est loin d\u2019avoir abandonn\u00e9 l\u2019espoir que quelqu\u2019un trouve un rem\u00e8de, et c\u2019est pourquoi elle a organis\u00e9 un tournoi de golf caritatif samedi dernier au Club de golf Pontefract. En appui \u00e0 la Cystinosis Research Foundation (CRF), 40 golfeurs et leurs familles se sont pr\u00e9sent\u00e9s pour la cause.<br \/>\u00ab\u2009Vous n\u2019avez aucune id\u00e9e de ce dans quoi vous vous embarquez [avec le diagnostic]\u2009\u00bb, a d\u00e9clar\u00e9 Marthe Drolet, la m\u00e8re de Lepack. \u00ab\u2009La premi\u00e8re ann\u00e9e a \u00e9t\u00e9 traumatisante.\u2009\u00bb<br \/>Sans rem\u00e8de, Lepack est sous un flot continu de m\u00e9dicaments depuis son plus jeune \u00e2ge. On lui a diagnostiqu\u00e9 pour la premi\u00e8re fois la cystinose \u00e0 18 mois, apr\u00e8s que ses parents aient remarqu\u00e9 que leur fille \u00e9tait diff\u00e9rente \u00e0 six mois.<br \/>La cystinose est une maladie rare qui touche moins de 50 personnes, principalement des enfants, \u00e0 travers le Canada. Il n\u2019y a actuellement que trois cas dans la r\u00e9gion d\u2019Ottawa.<br \/>\u00ab\u2009L\u2019ann\u00e9e derni\u00e8re, [le Canada] a perdu quatre personnes atteintes de cystinose, toutes \u00e2g\u00e9es de moins de 34 ans\u2009\u00bb, a dit M<sup>me<\/sup> Drolet.<br \/>Avec si peu de cas en Am\u00e9rique du Nord, la CRF, une organisation \u00e0 but non lucratif bas\u00e9e aux \u00c9tats-Unis, est le plus grand bailleur de fonds pour la recherche d\u2019un rem\u00e8de.<br \/>\u00ab\u2009Parce que la maladie est si rare, la plupart des fonds recueillis pour la recherche proviennent uniquement d\u2019\u00e9v\u00e9nements organis\u00e9s par les familles\u2009\u00bb, a-t-elle ajout\u00e9.<br \/>M<sup>me<\/sup> Drolet et son mari ont assist\u00e9 \u00e0 une conf\u00e9rence organis\u00e9e par la CRF en Californie cette ann\u00e9e, rencontrant d\u2019autres familles touch\u00e9es par la maladie, s\u2019informant sur la recherche que leur collecte de fonds aide et sur les diff\u00e9rentes strat\u00e9gies que ces familles emploient pour amasser de l\u2019argent.<br \/>Organis\u00e9 avec beaucoup d\u2019aide de la m\u00e8re de M<sup>me<\/sup> Drolet, Ghislaine Drolet, le tournoi a recueilli 5\u2009158\u2009$ pour la CRF. Cependant, ce total a \u00e9t\u00e9 port\u00e9 \u00e0 5\u2009415\u2009$ lorsque l\u2019\u00e9glise de Marthe, la Church of Faith, Praise and Prayer \u00e0 Campbell\u2019s Bay, a organis\u00e9 une collecte sp\u00e9ciale pour ajouter aux efforts de financement de la journ\u00e9e.<br \/>L\u2019ann\u00e9e derni\u00e8re, plus de 6\u2009000\u2009$ ont \u00e9t\u00e9 recueillis lors de cet \u00e9v\u00e9nement, et 1\u2009500\u2009$ suppl\u00e9mentaires ont \u00e9t\u00e9 amass\u00e9s gr\u00e2ce \u00e0 une randonn\u00e9e en VTT que la famille organise chaque ann\u00e9e.<br \/>Marthe cherche maintenant \u00e0 vendre des bracelets \u00e0 l\u2019approche de No\u00ebl en appui \u00e0 la CRF, une id\u00e9e qu\u2019elle a tir\u00e9e de la conf\u00e9rence.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Donald Teuma-CastellettiPONTEFRACT 24 juin 2017Chaque fois qu\u2019une fillette de huit ans de Mansfield met le pied dehors, elle doit porter ses lunettes de soleil. Elle peut commencer \u00e0 vomir \u00e0 tout moment, elle est constamment \u00e0 l\u2019h\u00f4pital et en sort, et elle doit prendre un m\u00e9lange de m\u00e9dicaments en tout temps.Pour MaryLynn Lepack, c\u2019est sa [&hellip;]<\/p>\n","protected":false},"author":8,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1669,1608,1695],"tags":[1167,1408,2007,2006,2005,1399,2004,1397,1237,1548,2003,2002],"class_list":["post-292213","post","type-post","status-publish","format-standard","hentry","category-health-care-fr","category-non-classe","category-sports-fr","tag-campbells-bay","tag-charities","tag-church-of-faith-praise-and-prayer","tag-club-de-golf-pontefract","tag-cystinosis-research-foundation","tag-fundraising","tag-ghislaine-drolet","tag-golf","tag-healthcare","tag-mansfield-et-pontefract","tag-marthe-drolet","tag-marylynn-lepack"],"featured_image_src":"","blog_images":{"medium":"","large":""},"acf":[],"ams_acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Des golfeurs s&#039;\u00e9lancent pour la recherche sur la cystinose - The Equity<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/theequity.ca\/fr\/des-golfeurs-selancent-pour-la-recherche-sur-la-cystinose\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Des golfeurs s&#039;\u00e9lancent pour la recherche sur la cystinose - The Equity\" \/>\n<meta property=\"og:description\" content=\"Donald Teuma-CastellettiPONTEFRACT 24 juin 2017Chaque fois qu\u2019une fillette de huit ans de Mansfield met le pied dehors, elle doit porter ses lunettes de soleil. 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