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.............................................."An International Alliance of Support and Science"




Foundation unveils new logo that represents

our worldwide communities of influence




Thank you for attending our international 2014 conference

By Sue Lomas

Dear Families and Friends,

It was so wonderful to see so many families from so many places at our International Conference in Orlando, Fla. 

Thank you all for making the trip and for the incredible outpouring of love and friendship.I also want to thank the families who could not make it to the conference but were so enthusiastic about watching and commenting on the live streaming of sessions.

Each conference, we see how strong, resilient and caring our group is. Even with all our growth, we continue to believe and nurture our one voice, our one mission: to improve the quality of life for all of our children.
And each conference, our resolve is reinforced. 

Thank you all for being part of it, part of this amazing family.

Board President, Phelan-McDermid Syndrome Foundation



Our sponsors were key to the conference's success

By Barbara Cruz

Dear PMSF Family,

I would like to offer a sincere thank you to this years conference sponsors and the team of volunteers who gave so freely of their time to make our 2014 conference a success.  Without the generosity and hard work of these individuals our conference would not have been possible.

Barbara Cruz,
Executive Director
Phelan-McDermid Syndrome Foundation



Largest number of families ever attends PMS conference

By Nick Assendelft
Vice President, Board of Directors

Outstanding. Wonderful. Enriching.

That's how many family members described their experiences at the 2014 Phelan-McDermid Syndrome Foundation International Conference in Orlando, Fla., the largest gathering ever of families affected by Phelan-McDermid Syndrome.

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Make a note of these significant upcoming events.


August Shopping online for a special event or birthday? Shop iGive.com or Amazon Smiles and choose Phelan-McDermid Syndrome Foundation as your charity of choice. Find out more here


September World Alzheimer's Month


Sept. 15 Take a few minutes to look over the valuable family support and medical information under the Resources link in the menu list on the left side of this page


Sept. 20-21 Giving Challenge, sponsored by the Community Foundation of Sarasota County, Fla. Noon to noon. Co-sponsor is the Patterson Foundation. Like our Facebook page to get all the details!


Sept. 21 World Alzheimer's Day


Sept. 22-23 Global Genes Rare Patient Advocacy Summit, Huntington Beach, California. Details here.


Sept. 28-Oct. 1 National Society of Genetic Counselors, Seattle, Washington


October Learning Disabilities Awareness Month; Disabilities Awareness Month


Oct. 10 Did you update your preferences in the PMS International RegistryContact Jackie Malasky.


Oct. 15 Rare Disease Day New York. PMS families will be staffing an informational table.

Oct. 18-22 The American Society of Human Genetics, Vancouver, Canada


Oct. 22 North East Family Gathering. 12:30-3:30 p.m. The Ark@Crawcrook, Main Road (B6317), Ryton, Tyne & Wear. Contact Gemma Smith Jibberjabba2@gmail.co.uk or 07971468599.

Nov. 7 Annie’s 7th Annual Golf Classic at Trophy Club Country Club in the Dallas-Fort Worth, Texas, area. For event information, donations or sponsorships, contact Veronica Frunzi.


Nov. 15-17 World Orphan Drug Congress Europe, Sheraton Brussel Hotel, Brussels, Belgium


Dec. 1 Did you know? Signing up to participate in the International Registry is not the same as signing up to be a member of the PMS Foundation. For the registry, go here. For Foundation membership, go hereBoth are FREE!

Dec. 1-2 New England Regional Genetics Group, Woburn, Massachusetts

Dec. 25 Christmas


Feb. 4 Jackson's Trivia Night. Details to come.

Feb. 28 Rare Disease Day