Eventos
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 questions.
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 questions.
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 along with it.
Bate-papo 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 stays, coordinating multiple therapies, or managing the emotional toll, this group provides an opportunity to share experiences, offer and receive advice, and build a community…
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 who are profoundly impacted by rare diseases make. This is important not only for measuring every day progress but also to ensure that as genetic…
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 journey from childhood to adulthood for children with complex medical and developmental needs.We will walk participants through the Transition to Adulthood/Life Stage Checklist step-by-step, breaking down key…
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.…
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 how they’ve stood up, spoken out, and made meaningful changes in their children’s lives, from navigating schools and healthcare systems to building inclusive communities. Whether…
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 your questions as well! Not in a relationship or your partner can't make it? You are still invited to come and learn!
What’s at Stake for Medicaid—and How Parents Can Take Action
Proposed changes to Medicaid could have serious consequences for families of children with medical complexity and disabilities. Join us for a timely and important conversation about what’s being proposed, what it could mean for your child’s care, and—most importantly—how you can make your voice heard. Hear from two seasoned advocates:Laura Weidner, Chief Advocacy and Government…
Parent Perspectives: Insights into Medical Decision-Making
Making major decisions about interventions such as feeding tubes or tracheostomies is one of the greatest responsibilities caregivers face for their child, weighing not only risks and benefits but also the goals of care for their child. Join a panel of experienced parents as they share valuable insights into their decision-making journeys. Discover the factors…
