family Archives

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…

DEE-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…

Managing the Journey with your Complex Child

In this conversation, you will meet Blyth Lord – mom to Cameron who had a genetic disorder and passed away at the age of 2. She is the Founder of…

Preventing Caregiver Burnout: A Workshop on Building Resilience

This workshop on on Building Resilience and Preventing Caregiver Burnout was held with an amazing mother daughter duo – STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…

Growth 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,…

Pediatric Hospice Support & Care

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…

Saving Our Telehealth for DEE Families

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,…

Promoting Healthy Relationships between Those with Severe Epilepsy and Their Siblings

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…

Strategies for Learning at Home with your DEE Child and Engaging the Whole Family

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…

COVID -19 Through the Lens of Grief

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…