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Family support


The Phelan-McDermid Syndrome Foundation believes strongly in family support as part of our Mission. Helping others to navigate a brave new world after having a family member diagnosed with Phelan-McDermid Syndrome is one of the main reasons our Foundation exists.


We are committed to making your tansition into the special needs community as painless as possible. We have set up a network of families around the world who serve as Regional Representatives. They devote many hours volunteering as the front line of support and contact for families like you. Their role is to:

-- Welcome you to the PMS Foundation.

-- Assist you in registering as a member.

-- Answer your questions.

-- Help you get in contact with other families who can offer you support.

-- Act as a liaison to the PMS Foundation for our growing membership.

-- Be a helpful resource for regional gatherings of families and caregivers.


Dedicated Regional Representatives work with families around the world.


To contact the Regional Representative for your area click here.


If you would like to be a Regional Representative or help as a volunteer for our Family Support / Membership Committee, contact Angie Lin Foster at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .


Office support


The Phelan-McDermid Syndrome Foundation is based in Venice, Florida. Our office staff works with families, the Board of Directors, researchers and other stakeholders to accomplish our Foundation's goals. The staff welcomes your questions, comments and suggestions.


Our mailing address:


Phelan-McDermid Syndrome Foundation

Attn: Sue Lomas

200 Capri Isles Blvd. Suite 7F

Venice, Florida 34292


Our phone number:


(941) 485-8000


Foundation support


You can contact a member of our Board of Directors here.


You can contact a Committee Chairperson here.



Using the Foundation's logo





The Phelan-McDermid Syndrome Foundation's logo(s) (present and former), variations of the logo(s) and name (and variations such as Team 22q13, PMSF, Phelan-McDermid Syndrome International Registry, PMS: It's Not What You Think, Phelan Lucky, #PhelanLucky and 22q13 Deletion Syndrome Foundation) are the sole and legal property of the Foundation. Our logo(s), variations thereof and name(s) are reserved for official use only and should be used for events sponsored by or benefiting the Phelan-McDermid Syndrome Foundation, unless permission is granted by officers of the Foundation. The Foundation's logo(s) and name(s) cannot be used for personal fundraising. The design, look, colors or wording of the logo(s) cannot be changed.

If you want to use the Foundation's logo(s), variations therof or name (or variations thereof) for personal fundraisers, raising awareness or community outreach you need to request permission in writing, either by e-mail or standard mail from the Foundation's officers. How the logo(s) and name will be used must be detailed and examples of artwork provided. Use of the Foundation's logo(s), variations thereof or name (or variations thereof) in questionable situations that could possibly tarnish the Foundation's reputation and goodwill will not be approved. If use of the logo(s) is approved, the "tm" (trademark) notation must be used with the logo.

In consideration of the granting permission, the outside user agrees to indemnify and hold harmless the Phelan-McDermid Syndrome Foundation, its Board, officers, employees or agents from any and all liability arising from the use of the name(s) and logo(s) pursuant to granting of permission.

Last Updated on Monday, 06 March 2017 19:40
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