Introducing our new PMSF Web site; there’s something here for everyone

Welcome to our new PMSF website, designed to better serve families, researchers, clinicians and others.

You’ll find some wonderful content on this site, from stunning photography to resources for families, from advocacy to international participation.

We set out to build a site that is easier to update so that we could bring you the latest news and information quickly. Key Foundation volunteers will be posting important and interesting blogs and content that will help you as you navigate your life with a special needs family member.

We also wanted a cleaner, up-to-date look and for that we want to thank Troy Scillian, who put in countless hours formatting, tweaking and polishing the site. The beauty of Troy’s format and the architecture we’re using is that the site now is a living creation, making it easier to add features and content. You may still find some parts of the website that are still under construction, but we continue to work on updating the site.

Something new on the site that you’ll notice is our call to action. With many voices we’ll be able to raise awareness of Phelan-McDermid Syndrome and fight for what we believe is right for our families. Under the Get Involved menu item you’ll find links for advocacy, volunteering, fund raising and more.

You’ll also find key information about Research, Family Support and a place customized for Newly Diagnosed families, which will have all the information and links they need to feel connected to our community after getting a stunning diagnosis from their doctors.

Besides Troy, we’d like to thank Elizabeth Homan for the beautiful black-and-white family photos that add dimension and emotion to the site, Brian Stack, Diane Linnehan, Rich Lomas, Eric Youngquist, Susan Lomas and Nick Assendelft for keeping this project moving forward, all the Committee Chairs for providing content for the site and so many others who had a role in this project in different ways.

Take the site for a spin and see what you think. We hope you like it.

Please send along any comments – good or bad – that you might have. You can email them to

PMSF | Phelan-McDermid Syndrome Foundation