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Welcome Family and Friends,

The Phelan-McDermid Syndrome Foundation 2018 International Family Conference and Phelan-McPosium is especially for you. It will be held July 18-22, 2018 at the Embassy Suites DFW Airport North in Grapevine, Texas.

The theme of our 11th biennial conference is “United in Hope”. Our goal is to embrace everyone attending so they feel welcome in the PMS community. We also want to give caregivers the opportunity to engage with researchers and other families so they feel they can handle the challenges of caring for someone with PMS. In addition, we want to give families hope for the future as PMS research continues to excel.

We will be offering a variety of sessions covering a wide range of topics and issues. We plan to have Family Fun Day on Wednesday and educational sessions and workshops throughout the day on Thursday, Friday, and Saturday.

This conference is sure to be one of the most fulfilling experiences along your journey with Phelan-McDermid Syndrome. We look forward to seeing you in Dallas!


Family Day | Wednesday, July 18, 2018, 9:00am-5:00pm

Resource Fair | Wednesday, July 18, 201, 10:00am-4:00pm

Getting to Know You Reception | Wednesday, July 18, 2018, 7:00pm-9:00pm

On Wednesday, “Family Fun Day” activities will include a resource fair, complimentary family photo sessions, service dog demonstrations, music therapy, cornhole and much more! Photo session registration will be on a first-come, first-served basis via an online signup process that will open later.

There will be a special welcoming session in the afternoon for families attending their first conference and a reception for all attendees in the evening.Siblings can sign up for a field trip to Main Event for bowling and laser tag. We will have a casual social gathering Wednesday night.

Family Sessions | Thursday, July 19, 2018, 9:00am-noon 

Phelan McPosium | Thursday, July 19 noon-5:00pm and Friday, July 20, 2018 9:00 am-noon

Group Family Dinner | Thursday, July 19 7:00pm-9:00pm


We are using a new child care vendor who has planned fun activities for all participants. NEW for 2018 is a sensory room which will be available for all families. A link to sign up directly with the child care provider will be included on the registration platform.

Families can bring genetic reports and sign up for 1:1 consultations by experts in the genetics of PMS; online sign up will be posted soon.

We are pleased to announce that the Phelan-McPosium will once again be a part of the conference. This is an opportunity to learn about and discuss real-life issues facing people with PMS and to help inform the development of new research studies. It will consist of six one-hour sessions, spread out over two days. Topics covered will include: genetics, regression, epilepsy, GI dysfunction, clinical trials, and challenging behaviors. There will be several fun social events too.

Our group dinner and “In It To Win It” drawing will be held Thursday evening.

Conference 2016

Family Sessions | Friday, July 20, 2018, noon-5:00pm

Western Rodeo Dance Party | Friday, July 20, 2018, 7:00pm-9:00pm

Family Sessions | Saturday, July 21, 2018, 9:00am-5:00pm

Wiffle Ball | Saturday, July 20, 2018, 7:00pm-8:30pm

We will be offering a variety of sessions covering a wide range of topics and issues that are important to PMS families. We will have sessions that will appeal to all ages and abilities. We plan to have educational sessions and workshops throughout the day on Thursday, Friday and Saturday.

Families can dance the night away at the “Western Rodeo” dance party on Friday night. We will wrap up Saturday evening outside with a game of whiffle ball.

Take the NEXT STEPS Now


Register for the 2018 PMSF International Conference


Book your discounted room(s) at the Embassy DFW


Register directly with Plus One Meetings.


Sponsorship opportunities for the PMSF Conference

+ Order Conference Gear (soon)

+ Things to do in Dallas (soon)

+ Full Agenda (soon)

+ View & Download Family Packet

+ Resource Fair Packet (soon)

+ Volunteer (soon)

PMSF will post details about the speakers, schedule in the coming weeks and months.


Check back soon for updates, and please spread the word with Phelan-McDermid families who may not know about the PMSF International Family Conference and McPosium.

Conference Questions, contact Veronica Frunzi or Rachel Alghren

or call the PMSF Office at (941) 485-8000





PMSF | Phelan-McDermid Syndrome Foundation