Eventos
Sleep & DEEs
Join us as we discuss sleep issues within the DEE and rare epilepsies community.
How to Get Grants and Funding for Medical Expenses
DEE-P Connections, in association with DYNC1H1 Association, is excited to welcome Advocacy Abby, who will assist families with medically complex children in navigating the complexities of grants and other funding sources.
ALL ABOUT The Connected Parent
Join us and the founder of The Connected Parent, Julie Walters. The Connected Parent is like Yelp, but for families that have kids with disabilities!
Surviving the Holidays – A DEE-P Chat
Join us as we chat about navigating the holidays with our medically complex kids. From finding the perfect gifts, making memories, or spending time in the hospital we plan to…
DEE-P Fundraising Workshop
Want support to start your GivingTuesday campaign? Join us for one of our 30 minute GivingTuesday Workshops. We’ll guide you through the setup process, provide campaign tips, and answer any…
DEE-P Fundraising Workshop
Want support to start your GivingTuesday campaign? Join us for one of our 30 minute GivingTuesday Workshops. We’ll guide you through the setup process, provide campaign tips, and answer any…
CVI: The Parent Perspective
We are partnering with CVI NOW & Perkins School for the Blind to bring you a parent panel. We will discuss navigating your child’s CVI diagnosis and all that comes…
Chat DEE-P
In this safe and supportive space, you’ll connect with others who understand the unique challenges of raising a child with a severe rare epilepsies (aka DEEs). Whether you're navigating hospital…
Making sure every inchstone of progress is measured – Update on The Inchstone Project
Join us for an update on The Inchstone Project which is working to make sure that there are assessments to measure the inchstones, not milestones, of progress our loved ones…
Growing Together: Navigating the Life Stage Checklist for Families
Join us for an empowering and informative webinar, Growing Together: Navigating the Life Stage Checklist for Families. This session is designed to support parents and caregivers as they navigate the…
The Life-Saving Nature of Epilepsy Surgery
Epilepsy surgery is not a last option and you will hear why as during this session we update you on emerging research around the efficacy and utility of surgical interventions…
Relationships 101 – Marriage & Parenting a Medically Complex Child
Join us, as Amanda Griffith-Atkins (Licensed Marriage & Family Therapist and PWS Mom) unpacks the realities of working on your marriage while parenting a child with disabilities and medical complexities. We’ll dig into the topics that sometimes feel impossible to repair: conflict, communication, resentment, and intimacy. It’s not easy - but we are far from…
