You are not alone.
We are here to walk on this journey with you.
Welcome to the “First 100 Days” of your membership with the Phelan-McDermid Syndrome Foundation. We’re so glad you found us and we are here to support you on your journey with this rare diagnosis.
Watch this brief welcome video and scroll down below for links to register for our “First 100 Days” welcome sessions and webinars. Please note that the “First 100 Days” program is for new members in the United States only.
Questions? Please email our Director of Family Support, Carla D’Imperio, at carla@pmsf.org
Join Our New Family Welcome Sessions:
Please join, Carla D’Imperio, Director of Family Support, for our monthly Zoom meetings with others who have recently joined our membership. We will share our stories and begin building community with other newly diagnosed families as well as gathering a list of questions. Our Director of Family Support will start to answer your questions as the group begins to explore Phelan-McDermid syndrome resources together.
Below are the upcoming session dates. We offer this session every month. You may register for as many of the sessions as you would like:
- Thursday, March 5 at 1pm ET — CLICK HERE TO REGISTER
- Thursday, March 26 at 1pm ET — CLICK HERE TO REGISTER
- Thursday, April 30 at 1pm ET — CLICK HERE TO REGISTER
- Thursday, May 21 at 1pm — CLICK HERE TO REGISTER
Watch Our New Family Webinar:
Our New Family Webinar is a recorded session that covers a lot of the information that is shared in our live Zoom meetings, but without the interaction with our Director of Family Support and other new families. If your schedule does not allow you to attend our live sessions or if you would like to review material covered in the live sessions, please watch the webinar recording. You will learn about Phelan-McDermid syndrome and take a tour of our online resources. Please email any questions you have to carla@pmsf.org.
Watch Our Pathways Education Series Webinars
From nutrition and medical advocacy to caregiver support and navigating insurance, each Pathways webinar offers valuable insights and practical tools. You can access all the recordings, slides, and handouts here. The links to the recordings are also below.
- How to Talk about Phelan-McDermid Syndrome
- De-escalation Strategies for Crisis Situations
- Medical Advocacy & Strategies
- Puberty, Menstrual Management, and Women’s Health in Phelan-McDermid Syndrome
- Handling Denials from Insurance & Medicaid
- Diving into State Resources (US-focus)
- Coping Strategies for Caregivers
- Promoting Overall Health in Phelan-McDermid Syndrome
- Nutrition and Phelan-McDermid Syndrome
- A Tour of PMSF’s Resources
Still Need Help?
If you would prefer to meet with our Director of Family Support one-on-one, please click here to schedule a time to meet or send her an email at carla@pmsf.org.