{"id":127,"date":"2022-03-09T15:48:12","date_gmt":"2022-03-09T15:48:12","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2022\/03\/09\/2022-3-9-raymond-a-wood-foundation-welcomes-new-board-member-and-elects-new-chair\/"},"modified":"2023-08-22T19:39:30","modified_gmt":"2023-08-22T19:39:30","slug":"2022-3-9-la-fondation-raymond-a-wood-accueille-un-nouveau-membre-du-conseil-dadministration-et-elit-un-nouveau-president","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2022\/03\/09\/2022-3-9-raymond-a-wood-foundation-welcomes-new-board-member-and-elects-new-chair\/","title":{"rendered":"La Fondation Raymond A. Wood accueille un nouveau membre du conseil d'administration et \u00e9lit un nouveau pr\u00e9sident"},"content":{"rendered":"
\n

La Raymond A. Wood Foundation (RAWF), une organisation de d\u00e9fense des patients atteints de maladies rares, dont la mission est d'offrir aux survivants des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires (H-P) une meilleure qualit\u00e9 de vie en leur donnant acc\u00e8s \u00e0 l'\u00e9ducation, \u00e0 la technologie et \u00e0 des traitements \u00e9volutifs, annonce des changements passionnants au sein du conseil d'administration de la fondation, notamment l'arriv\u00e9e de Christine Selko et l'\u00e9lection d'Eugenie Hsu, Ph.D., au poste de pr\u00e9sidente.<\/p>\n<\/div>\n

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Chris et son fils, survivant d'un craniopharyngiome depuis 19 ans<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/div>\n

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La m\u00e8re de Chris Selko, survivant d'un craniopharyngiome et militant depuis 19 ans, entre au conseil d'administration de la RAWF
\n<\/strong>Chris est professeur auxiliaire et enseigne depuis 25 ans la composition universitaire, la lecture et l'\u00e9criture, ainsi que l'anglais langue seconde \u00e0 une population vari\u00e9e dans des environnements tr\u00e8s diff\u00e9rents. En 2002, un craniopharyngiome a \u00e9t\u00e9 diagnostiqu\u00e9 chez le plus jeune de ses quatre enfants et sa vie a chang\u00e9 radicalement. Soucieuse d'am\u00e9liorer les conditions de vie de son fils, elle a commenc\u00e9 \u00e0 travailler dans le domaine de la d\u00e9fense des droits. Chris dit qu'elle a beaucoup appris et qu'elle a commis de nombreuses erreurs au cours des 19 derni\u00e8res ann\u00e9es dans sa recherche des meilleures options possibles pour que son fils ait une vie \u00e9panouie et heureuse, tout en essayant de garder toute sa famille intacte alors qu'elle devait faire face aux d\u00e9fis pos\u00e9s par son diagnostic.<\/p>\n

Chris a travaill\u00e9 avec le Statewide Parent Advocacy Network en tant que Family Research Specialist et Parent-to-Parent Outreach Coordinator. Elle continue d'aider les familles confront\u00e9es au diagnostic d'une tumeur c\u00e9r\u00e9brale en tant que mentor pour la Pediatric Brain Tumor Foundation.<\/p>\n

\"Je sais que le parcours de chaque famille est diff\u00e9rent, mais la peur et le sentiment de d\u00e9sespoir qu'une famille ressent lorsqu'on lui diagnostique une tumeur sont les m\u00eames\", a d\u00e9clar\u00e9 Chris. \"C'est pourquoi je me suis efforc\u00e9 d'aider d'autres familles qui se trouvent dans l'incertitude face \u00e0 un enfant malade. Mon objectif est d'apporter mon soutien et de fournir toute l'aide possible.<\/p>\n

Chris pense que gr\u00e2ce au travail dynamique de la communaut\u00e9 RAWF, elle croit que les survivants, comme son fils, trouveront les alternatives et les solutions qui leur donneront la qualit\u00e9 de vie que toute personne m\u00e9rite.<\/p>\n

Eugenie Hsu, membre du conseil d'administration, \u00e9lue pr\u00e9sidente de RAW
\n<\/strong>Eugenie Hsu a rejoint le conseil d'administration de la RAWF en mars 2020, lorsque la fondation a commenc\u00e9 \u00e0 faire \u00e9voluer sa mission et son r\u00f4le dans la d\u00e9fense des survivants des tumeurs c\u00e9r\u00e9brales H-P. Au cours des deux derni\u00e8res ann\u00e9es, elle a \u00e9t\u00e9 la force motrice de la croissance de la fondation. Au cours des deux derni\u00e8res ann\u00e9es, elle a jou\u00e9 un r\u00f4le moteur dans la croissance de la fondation. Elle pr\u00e9side le comit\u00e9 de communication, si\u00e8ge au comit\u00e9 de recherche et anime un groupe de soutien mensuel pour les parents et les soignants d'adolescents et de jeunes adultes ayant surv\u00e9cu \u00e0 un craniopharyngiome. En outre, Eug\u00e9nie a jou\u00e9 un r\u00f4le d\u00e9terminant dans l'\u00e9laboration de la demande de subvention pour l'initiative Chan Zuckerberg Rare As One Cycle Two, qui a \u00e9t\u00e9 attribu\u00e9e \u00e0 la RAWF \u00e0 l'automne 2021 et qui permettra d'accro\u00eetre les travaux de recherche et les capacit\u00e9s de la RAWF. Elle a \u00e9galement parrain\u00e9 une campagne de dons jumel\u00e9s pour Giving Tuesday qui a permis de collecter pr\u00e8s de $30 000 pour la campagne Roar for Rare de RAWF.<\/p>\n<\/div>\n

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Eug\u00e9nie et son fils, 18 ans, survivant d'un craniopharyngiome<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/div>\n

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Eugenie Hsu est psychologue dipl\u00f4m\u00e9e et a pris sa retraite en 2021 apr\u00e8s avoir travaill\u00e9 au Kaiser Permanente Oakland Medical Center en psychiatrie pour adultes depuis 1994. Depuis qu'elle a pris sa retraite de Kaiser, Eugenie exerce dans un cabinet priv\u00e9 o\u00f9 elle se sp\u00e9cialise dans le traitement des survivants de traumatismes. Eugenie est titulaire d'une licence en psychologie de l'universit\u00e9 de Californie \u00e0 Davis et d'un doctorat en psychologie clinique de l'\u00e9cole californienne de psychologie professionnelle.<\/p>\n

Apr\u00e8s que son fils a \u00e9t\u00e9 diagnostiqu\u00e9 et trait\u00e9 pour une tumeur c\u00e9r\u00e9brale craniopharyngienne \u00e0 l'\u00e2ge de 8 ans, Eug\u00e9nie s'est attach\u00e9e \u00e0 trouver des solutions et des traitements pour am\u00e9liorer sa qualit\u00e9 de vie et celle des autres survivants. En 2016, elle a effectu\u00e9 un traitement exp\u00e9rimental sur son fils en utilisant la neurohormone, l'ocytocine ; par la suite, elle a relat\u00e9 leur exp\u00e9rience dans un blog tr\u00e8s lu (Hope for HO) et le traitement r\u00e9ussi l'a amen\u00e9e \u00e0 publier une rapport de cas dans le Journal of Clinical Endocrinology and Metabolism (Journal de l'endocrinologie clinique et du m\u00e9tabolisme)<\/a>.<\/p>\n

Selon Eugenie, \"je suis convaincue que les d\u00e9fenseurs des patients et des soignants peuvent faire progresser la science et les innovations pour am\u00e9liorer la sant\u00e9 et la qualit\u00e9 de vie des patients\".<\/p>\n

Croissance et \u00e9volution
\n<\/strong>Au cours des prochains mois, RAWF \u00e9toffera son personnel et \u00e9laborera une feuille de route pour la recherche sur le craniopharyngiome, en plus de ses programmes actuels, notamment la fourniture d'analyseurs sanguins portatifs aux enfants atteints de tumeurs c\u00e9r\u00e9brales et souffrant de diab\u00e8te insipide compliqu\u00e9, l'organisation d'\u00e9v\u00e9nements d'apprentissage mensuels, la planification de la conf\u00e9rence virtuelle annuelle et la collaboration \u00e0 la mise au point d'un compteur de sodium \u00e0 domicile.<\/p>\n

\"Nous avons bon espoir que la croissance des prochains mois permettra \u00e0 la Raymond A. Wood Foundation de s'imposer comme une voix forte en faveur de solutions pour le traitement de ces tumeurs et la gestion continue des difficult\u00e9s auxquelles les survivants sont confront\u00e9s\", a d\u00e9clar\u00e9 Amy Wood, directrice ex\u00e9cutive de la RAWF. \"Nous sommes ravis que Chris rejoigne le conseil d'administration et qu'Eugenie en assure la pr\u00e9sidence, car leur passion et leur engagement permettront d'aller encore plus loin.\"<\/p>\n

Comment s'impliquer ?
\n<\/strong>Le travail de la Raymond A. Wood Foundation est principalement financ\u00e9 par des donateurs individuels. Contributions uniques, dons mensuels<\/a>, organiser une collecte de fonds<\/a>r ou adh\u00e9rer en tant que membre<\/a> sont autant de moyens de soutenir et de d\u00e9velopper le travail de la RAWF. La fondation est \u00e9galement \u00e0 la recherche de personnes engag\u00e9es et passionn\u00e9es. membres du conseil d'administration<\/a> qui ont des comp\u00e9tences en administration des affaires, en finance, en marketing, en soins de sant\u00e9 et en collecte de fonds pour se joindre \u00e0 notre conseil d'administration. Pour plus d'informations sur la mani\u00e8re de soutenir RAWF, envoyez un courriel \u00e0 Amy Wood \u00e0 l'adresse suivante amyw@rawoodfoundation.org<\/a>.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

La Raymond A. Wood Foundation (RAWF), une organisation de d\u00e9fense des patients atteints de maladies rares, dont la mission est d'offrir aux survivants des tumeurs c\u00e9r\u00e9brales hypothalamo-hypophysaires (H-P) une meilleure qualit\u00e9 de vie en leur donnant acc\u00e8s \u00e0 l'\u00e9ducation, \u00e0 la technologie et \u00e0 des traitements \u00e9volutifs, annonce des changements passionnants au sein du conseil d'administration de la fondation, notamment l'arriv\u00e9e de Christine Selko et l'\u00e9lection d'Eugenie Hsu, Ph.D., au poste de pr\u00e9sidente.<\/p>","protected":false},"author":6,"featured_media":128,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[30,1],"tags":[],"class_list":["post-127","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rawf-news","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nRaymond A. 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