You Reading This Matters.
October 22
When you take the time to read, ask a question, learn something new, or share what you discover, you help more people understand Phelan-McDermid syndrome.
This October 22, join families, advocates, researchers, clinicians, and supporters around the world in raising awareness and celebrating the individuals at the heart of our community.
Ask. Learn. Share.
About Phelan-McDermid Syndrome Awareness Day
Phelan-McDermid Syndrome Awareness Day (PMSAD) is held every year on October 22. Families began this tradition to shine a light on Phelan-McDermid syndrome, and it has grown into a global effort to build awareness, understanding, and support.
Green has long represented the Phelan-McDermid Syndrome Foundation and our community. On October 22, people around the world wear green, share stories and educational resources, illuminate landmarks, and invite others to learn about Phelan-McDermid syndrome.
Every story shines green, and every person who stops to read, learn, and share helps that light reach someone new.
Why Awareness Matters
Awareness is more than recognition. It can lead to understanding, connection, and action.
- Greater recognition can help families and healthcare professionals identify Phelan-McDermid syndrome and may shorten the path to a diagnosis.
- Greater visibility draws attention from researchers, clinicians, industry partners, and policymakers who can help improve care and advance research.
- More understanding helps individuals with Phelan-McDermid syndrome and their families feel seen, respected, and supported.
- Sharing real experiences reduces isolation, challenges assumptions, and celebrates the dignity and individuality of every person with Phelan-McDermid syndrome.
Every question builds understanding. Every share helps someone new discover our community.
Ask. Learn. Share.
You do not need to be an expert or organize a large event to make a difference. Awareness can begin with one simple action.
Ask
Start a conversation. Ask a family about their experience. Invite someone to tell you more. Questions asked with curiosity and respect can lead to greater understanding.
Learn
Take a few minutes to learn what Phelan-McDermid syndrome is, how it can affect individuals differently, and why research, clinical care, family support, and community connection all matter.
Share
Share a PMSF post, video, family story, or educational resource with someone else. Add a personal message about why awareness matters to you, or simply invite others to learn alongside you.
You read it. Now help someone else discover it.
What Is Phelan-McDermid Syndrome?
Phelan-McDermid syndrome is a rare genetic condition most often caused by a deletion or change involving the SHANK3 gene on chromosome 22.
The condition can affect communication, learning, movement, sleep, behavior, and many other areas of health and development. Each person’s experience is different. Some individuals have many medical and developmental needs, while others are affected in different or less visible ways.
Most individuals with Phelan-McDermid syndrome require lifelong support, but a diagnosis does not define who they are. They are children, teenagers, and adults with distinct personalities, relationships, interests, strengths, challenges, and stories.
Join Us on October 22
There are many ways to participate in Phelan-McDermid Syndrome Awareness Day. Choose what feels meaningful and manageable for you.
Social Media
Follow PMSF on our social media accounts and share our family stories, videos, and educational graphics. Adding even one sentence about why the message matters to you can help others connect with it.
Be sure to tag PMSF:
- Facebook: @Phelan-McDermid Syndrome Foundation
- Instagram: @pmsf_official
- LinkedIn: @Phelan-McDermid Syndrome Foundation
- YouTube: @PhelanMcDermidSyndromeFoundation
Create your Facebook Frame
- Edit the Canva frame with your photo
- MAKE YOUR POST SHAREABLE! Remember, posts on closed groups are NOT shareable.
- INCLUDE this statement in your post: “for more information about Phelan-McDermid syndrome, go to www.pmsf.org“.
Share Your Story
Share a photo, video, or written post about your loved one or your family’s experience. You might answer one of these questions:
- What is one thing you want people to understand about Phelan-McDermid syndrome?
- What brings your loved one joy?
- What do you wish others understood about your family’s experience?
- What is something special you want people to know about your loved one?
- Why does Phelan-McDermid Syndrome Awareness Day matter to you?
You do not need to tell your entire story. One photo, one memory, or one meaningful thought can help someone understand more.
Tag PMSF so we can see and potentially share your post.
Awareness Day Shirt
Wear yours on October 22 to celebrate our community, raise awareness, and help someone new learn about Phelan-McDermid syndrome.
The 2026 official shirt can be worn on October 22 and throughout the year to help start conversations about Phelan-McDermid syndrome.
The front reminds people that “You Reading This Matters.” The back invites them to ask an important question: “What is Phelan-McDermid syndrome?”
Order early to give your shirt plenty of time to arrive before Awareness Day!
Use this link to shop: bonfire.com/store/pmsf
Phelan-McDermid Syndrome One-Page Summary
Looking for a simple way to share information about Phelan-McDermid syndrome with schools, healthcare providers, or your community? Download and print our one-page summary, designed to share key information about Phelan-McDermid syndrome in a clear and approachable way. If you’d like to create a personalized version with your loved one’s photo and name, use this template.
Yard Sign
Place a Phelan-McDermid Syndrome Awareness Day sign in your yard, school, workplace, or community space to help introduce others to the cause.
Our yard sign is designed for a standard 24 x 18 inch size. You have two easy options:
Order directly through Canva
Use this link: Canva Yard Sign
Canva will print and ship the sign straight to your home.
Download and print elsewhere
Download the yard sign image.
Upload it to any local or online printer that offers 24 x 18 inch yard signs (e.g., Staples, Vistaprint, FedEx).
Tip: Most yard signs are printed double-sided on weatherproof material and come with an H-stake for your lawn.
Shine Green.
Ask a landmark, business, school, government building, or community space to light up green on October 22.
Lighting requests often need to be submitted several weeks in advance, so we recommend reaching out as early as possible.
Watch videos from past years
Shine Green. Post. Share. Contact Media
Contact Local Media
Local newspapers, television stations, radio stations, podcasts, and community publications can help bring Phelan-McDermid syndrome stories to a wider audience.
When contacting a reporter:
- Look for someone who covers health, disability, education, science, or community stories.
- Explain your personal connection to Phelan-McDermid syndrome.
- Share why greater awareness matters.
- Include the PMSF press release and a link to PMSF.org.
- Reach out by early October whenever possible so the outlet has time to consider the story.
For Families: Customize Your Local Press Release
Use this editable template to introduce your loved one, explain your family’s connection to Phelan-McDermid syndrome, and contact media outlets in your community.
Official PMSF Announcement
Read and share the Phelan-McDermid Syndrome Foundation’s official announcement about 2026 Phelan-McDermid Syndrome Awareness Day.
Request a Proclamation
Invite your city, county, or state government to officially recognize October 22 as Phelan-McDermid Syndrome Awareness Day.
Requirements and submission timelines vary, so contact your local government as early as possible.
About the Phelan-McDermid Syndrome Foundation
The Phelan-McDermid Syndrome Foundation supports the largest global community of people with Phelan-McDermid syndrome and their families.
We are doing everything it takes to make today better and the future brighter for everyone living with this complex condition, from the moment of diagnosis to the delivery of treatments and cures. We provide family support, improve clinical care, advance research, and work toward a future in which every person with Phelan-McDermid syndrome is recognized, supported, and treated with dignity.
You Reading This Matters. You Sharing It Matters, Too.
Thank you to every individual, family member, advocate, researcher, clinician, partner, and supporter helping the world learn about Phelan-McDermid syndrome.
Awareness does not end on October 22. Every question, conversation, and shared story helps build greater understanding throughout the year.
Ask. Learn. Share.