The new PMSF website launched on August 11th! With the help of our amazing staff and volunteers, we have just launched the NEW Phelan-McDermid Syndrome Foundation website with a new look and added resources at the same address https://pmsf.org. 

The design was inspired by PMS mom, Jenn Carter, who expressed that our website did not help her feel hopeful when she first visited the site after her child’s diagnosis, which is exactly the opposite of what we want when a new family finds us. Our membership is growing at a rate of three new families every four days and we want to be sure they find the information and connections they need.

The website update began in October 2020 as part of a 48-hour blitz led by Lisa Brown, a valued friend of PMSF. We formed a team including Jenn Carter, Troy Scillian (PMS Dad), and volunteers Alex Liebich, Wendy Qu, and Gouda Clark with the primary goal of making the site more welcoming, representative of our community, and easier to navigate.  We were able to create a mock-up site during the blitz.  We decided to move forward with the full redesign to accomplish our goals:

1. Create a website that families will find warm and welcoming.
2. Make the website easier to navigate.
3. Add a searchable Resource Library  
4. Add an Event Calendar
5. Add a translation tool in the footer
6. Publish the first New Family e-book.

Our PMSF staff, families, and volunteers provided striking photos, reviewed pages, provided content, and gave feedback along the way. It was a truly collaborative effort!

Our core team spent many Saturday mornings, evenings, and holidays since October meeting, designing, and creating the site. Lisa, the site architect, kept the team on pace, and Troy, our graphic designer, delivered his artistic genius to PMSF once again. We created a website that will provide the framework to hold current information and resources about PMS and PMSF.  There are also links on the site where anyone can suggest resources. Below are several ways to explore the new website:

• Searchable Resource Library:
  • Go to https://pmsf.org/resource-library/
  • Scroll to the bottom section of the page
  • Use the Category and/or the Tag dropdowns to narrow your search
  • Click the orang View/Download Link to access the resource

• Check out what’s happening . The three posts in the center of the page will change as the blog posts update. These posts will highlight research, fundraising, and events. Watch for more updates on the 2022 Conference here soon!

• Visit the News & Events page to see the latest blogs for PMSF and external happenings!

• New Families from around the globe are welcome at PMSF. We receive three new memberships every four days and each one is a unique story. Our hope is that everyone feels welcome and can connect with someone or learn about something that makes the journey just a bit easier.

Please feel free to offer feedback as the PMSF website is a living, growing resource for our community and I’m sure we still have a few typos ☺ and a fussy link here and there. Send comments, corrections, and suggestions to me at diane@pmsf.org.

Thank you to everyone who helped create the new site.