Family Support
We are Here for You
Family Support Programs
Caregiver Support Groups
Living with a Phelan-McDermid syndrome diagnosis can be challenging. There are good days and days you would rather forget. Sometimes, just talking or listening to someone can help. There is comfort in knowing others may be experiencing something similar to what you are going through. We have a new Caregiver Support Group program where family members share their different perspectives on living with Phelan-McDermid syndrome.
Remember, we are here for you. Learn more about our Caregiver Support Groups by clicking here.
Build Your Network
You’ve heard the saying that it takes a village to raise a child. That’s especially true when navigating life and parenting a child with Phelan-McDermid syndrome. Building a strong network and care team is essential. From school and support services to medical support, financial aid and transitioning to adulthood, here are some resources that may help you build your team:
- If your child is younger than three years old, ask your doctor about eEarly iIntervention services and learn about your state/county family support health.
- Seek out other parents of children/adults with autism or epilepsy.
- Ask your school system for information on your Parent Advisory Council for special educational services.
- Seek social media groups that focus on the transition to adult services.
- Above all, become an educated advocate for your child through the training offered in all US states through the Parent Training Institute in your area.
- Get to know the people who will support your child throughout their life.
- Learn about Waiver Services in your state.
Our global community is growing every day. Join the Phelan-McDermid Syndrome Foundation community to be counted in the worldwide population numbers. The Foundation maintains global membership and works collaboratively with our global partners to help you connect with other families.
When you join our membership, your contact information will be shared with an organization or peer-support individual who lives in your region of the world.
"Remember that this is a marathon not a sprint, so take the time you need for every step. Don’t wear yourself out trying to get everything done at once"
Gather and Learn
Every two years, families, researchers, clinicians, and others who support people with Phelan-McDermid syndrome come together at our International Family Conference to learn, laugh and uplift each other. Families describe the International Family Conference ais life-changing. This event is sometimes a family’s first encounter with others who are diagnosed with Phelan-McDermid syndrome. Often people who have met only through social media can be face-to-face. Our moms and dads have developed life-long friendships and networks of support at our gatherings.
Be sure to visit our Resource Library for conference recordings.
In non-conference years, we create a virtual or in-person regional conference. We partner with a clinical care center in a major city and invite speakers to present their work to our families. You will find resources from our Stanford and Boston Children’s Hospital events in the Resource Library. These events reduce the travel burden on families while providing access to the best clinicians, researchers, and support providers in the local area.
Contact Us if you would like to be involved in creating a local conference in your area.
Our Regional REPs coordinate periodic in-person gatherings to help families create connections, share stories and support each other. It may be in the form of a mom’s tea, an outing at the zoo, pot luck at a member’s house, or a day in the park. Groups have also coordinated regional conferences in collaboration with a local medical center. Having the opportunity to meet others who live in your area can reduce isolation and foster friendships.
Join Our Community
The Phelan-McDermid Syndrome Foundation has the largest community of individuals and families living with this genetic condition in the world. Our Phelan-McDermid syndrome community grows by nearly one new family a day.
Learn more and join us to find the hope, help and answers you need now.
