You are not alone.
We are here to walk on this journey with you.
Watch Our Welcome Video
Welcome to the “First 100 Days” of your membership with PMSF. We’re so glad you found us and we are here to support you on your journey with this
Watch our welcome video and then scroll down for links to register for our New Family Welcome sessions. Please note that the “First 100 Days” is for families in the U.S. only.
Questions? Please email our Director of Family Support, Carla D’Imperio, at carla@pmsf.org
Join Our New Family Welcome Program
Finding out that your child or loved one has Phelan-McDermid syndrome can bring questions, emotions, and a lot of new information. Our First 100 Days Welcome Meetings are a place to connect, ask questions, learn more about Phelan-McDermid syndrome, and get to know the people and community at PMSF.
We offer a different virtual welcome meeting each month, with the three meetings repeating throughout the year. There is no right order or timeline. Wherever you are, we’re here for you.
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Welcome & Finding Your Way
With PMSF’s Director of Family Support
September 24 | 1pm ET
Join our Director of Family Support, who is also a Phelan-McDermid syndrome family member, for an informal, family-to-family conversation. Bring your questions, learn about PMSF resources and support, and connect with someone who understands the experience of navigating a Phelan-McDermid syndrome diagnosis.
Click here to register for “Welcome & Finding Your Way”
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Understanding Phelan-McDermid Syndrome & the Science Ahead
With PMSF’s Chief Science Officer and Director of Family Support
October 22 | 1pm ET
Learn more about Phelan-McDermid syndrome science, what we know and are still learning, and the research landscape. Bring your questions and talk directly with our Chief Science Officer and Director of Family Support about the science and research that matter to families.
Click here to register for “Understanding Phelan-McDermid Syndrome & the Science Ahead”
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Your Foundation & Your Community
With PMSF’s CEO and Director of Family Support
November 19 | 1pm ET
Meet PMSF’s CEO and learn more about the Foundation, our community, and the work we are doing together. This informal conversation is an opportunity to learn about PMSF’s role and direction, how we connect and support families, and the broader Phelan-McDermid syndrome community.
Click here to register for “Your Foundation & Your Community”
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These meetings are designed for parents, primary caregivers, and legal guardians of individuals with Phelan-McDermid syndrome. New meetings are offered each month, so if you can’t make an upcoming date, another opportunity will be available.
Explore Our Clinical Care Resources
There are several key resources that we want to make sure our newly diagnosed families are familiar with:
- Medical Advisories
- International/U.S. Clinical Care Guidelines
- European Clinical Care Guidelines
- Pharmacological recommendations
- Phelan-McDermid Syndrome Clinics
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
Watch our New Family Webinar
A new Phelan-McDermid syndrome diagnosis brings a lot of questions. This welcoming webinar will help you get oriented and discover the resources and support available through PMSF.
We’ll introduce you to important resources for understanding Phelan-McDermid syndrome, navigating medical care, and finding reliable information to share with your child’s care team. Most importantly, you’ll learn where to turn when questions come up and how PMSF can support your family along the way.
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.