Articles étiquettés ‘family’
Real Moms, Real Stories: Advocacy That Inspires
Join us, for an inspiring and down-to-earth conversation with six incredible moms who are walking the path of advocacy for their disabled children. They’ll share personal stories—real, raw, and powerful—about…
Lire la suiteDEE-P Chat: Relationships 101 Follow-up
Join us, for a follow up with your partner for a “DEE-P Chat” with other couples to feel seen and heard. Amanda and Anne will be in attendance to answer…
Lire la suiteGérer le parcours avec votre enfant complexe
Dans cette conversation, vous rencontrerez Blyth Lord – maman de Cameron qui souffrait d'une maladie génétique et est décédée à l'âge de 2 ans. Elle est la fondatrice de…
Lire la suitePrévenir l'épuisement des soignants : un atelier sur le renforcement de la résilience
Cet atelier sur le renforcement de la résilience et la prévention de l'épuisement des soignants a eu lieu avec un incroyable duo mère-fille : la mère et travailleuse sociale de STXBP1, Amelia Seraphia Derr et sa mère,…
Lire la suiteGrowth Attenuation Therapy – Everything you want and need to know
Join us to learn more about growth attenuation therapy (GAT) – an intervention to bring on early puberty in order to reduce the ultimate growth of a child. Since 2006,…
Lire la suiteSoutien et soins en soins palliatifs pédiatriques
This is a recording of the webinar “Complex Continual Care for those with living DEEs and their families,” which was held on November 30th, 2021. Pediatric hospice support is not…
Lire la suiteSauver notre télésanté pour les familles DEE
This is a recording of the webinar “Saving Our Telehealth,” which was held on July 20th, 2020. For families who have trouble leaving the house with their medically fragile children,…
Lire la suitePromouvoir des relations saines entre les personnes souffrant d'épilepsie sévère et leurs frères et sœurs
Have you struggled with how to manage the relationships between your medically complex children and their more typically developing siblings? Are you a sibling to someone with severe epilepsy and…
Lire la suiteStratégies pour apprendre à la maison avec votre enfant DEE et impliquer toute la famille
This is a recording of the DEE-P Connections webinar from May 13, 2020 “Strategies for Fun and Learning at Home for Kids with DEEs and the Whole Family” which explored…
Lire la suiteCOVID-19 à travers le prisme du deuil
DEE-P Connections planned this webinar in coordination with The Wendt Center for Loss and Healing. This is a recording of the webinar originally broadcasted on April 14, 2020. The webinar…
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