THANK YOU to everyone who made this year's conference a wonderful experience


Another outstanding conference

draws 150 families, researchers

 

By Vicki Kurkimilis and Veronica Frunzi

Conference Planning Committee

Contributor: Tony Samuel

 

About 150 families attended last month’s International Family Conference and Phelan-McPosium. Families came from 10 countries: Australia, Brazil, Canada, Colombia, France, Norway, Portugal, Spain, the United Kingdom and the United States.

 

Approximately 95 individuals diagnosed with Phelan-McDermid Syndrome were onsite, along with many siblings, parents, caregivers and extended family members. All totaled we had close to 550 people registered for the conference at the Caribe Royale in Orlando, Florida.

 

Throughout the conference, experts in the field of rare diseases shared information regarding the latest research and strategies being used to understand Phelan-McDermid Syndrome. The conference is a great opportunity to network with other families and to share best practices in the roundtable discussions.

 

“It was great to connect with other families and to see the scientists who are trying to make a difference for kids like our daughter Nadia,” Tania Samuel told the StarNews in North Carolina. She and husband Tony have a daughter, Nadia, with PMS. Nadia is the star of two children’s’ books Tony has written.

 

It takes a lot of planning and a lot of volunteers to put on an event of this size. We are very grateful for all those that worked together to make it a success.

 

Many of us have spent countless hours planning for the 18 months. Others volunteered onsite to help with registration, art therapy, the store and more. Many family members and parents led sessions through the family conference, preparing materials and presentations. It really is a group effort and we thank everyone who played a part in making it all happen.

 

Tell us about your experience

 

More than 80 participants have filled out our post-conference evaluation form. If you haven’t done it yet, please do so soon. Your thoughts and comments will help us to plan an even better conference experience for 2018.

 

You can watch sessions online

 

Our volunteer AV team is getting many of the conference sessions online through our YouTube channel. You can also watch sessions from 2014’s conference. We’ll also post to our Web site and Facebook pages edited slide presentations from the researchers who presented information at the conference. Look for those soon.

 

Want to go shopping?

 

We are working to get some of the new items from the conference store online in our PMSF store. You can buy T-shirts, notebooks and other items by shopping our online store or calling the office at (941) 485-8000.



 

We've got the links you need to plan your trip


FINAL AGENDAS: Family Fun Day and Phelan-McPosiumConference sesions and events

 

Download our free PMSF conference phone app through the App Store or Google Play.


Don't forget to like our Conference Facebook page for all the latest news.


QUESTIONS? This e-mail address is being protected from spambots. You need JavaScript enabled to view it



 

10 things (+2 bonus items) you’ll need


to know as international conference nears

 

We are just weeks away from the 2016 Phelan McDermid Syndrome Foundation International Family Conference and Phelan-McPosium. Here are some reminders and updates for you.


REGISTRATION: Deadline is July 15.  Don’t wait, register today. If you have registered and need to cancel, there is a $25 cancellation fee before July 9.  After July 10, we are not able to refund any payment if you cancel your registration.


HOTEL ROOMS: The conference will be held at the Caribe Royale All Suite Resort. The block of rooms we had set aside for attendees is SOLD OUT. The hotel may still have rooms available at their regular rate. You can book through their website at www.cariberoyale.com or by calling them at (888) 258-7501. If you have hotel room booked and you no longer need it, you need to call the hotel. The Caribe Royale’s cancellation policy requires you cancel at least 72 hours prior to your arrival or you will be charged one night’s room and tax.


1:1 GENETIC CONSULTATIONS: You can sign up to have a one-on-one consultation with one of our top experts in the genetics of PMS: Jon Bernstein, MD, PhD (Stanford), Catalina Betacur MD, PhD (INSERM) and Katy Phelan, PhD (Tulane). Sessions are available Thursday and Saturday by appointment only. You need to bring with you your child’s genetic report (ALL of the ones you have) and parents genetic reports. Due to the high demand for these consultations, each will be limited to 10 minutes. Sign up here before all the spots are gone.


FAMILY PHOTOS: Complimentary family photo sessions are available Wednesday, July 20, from 9 a.m. to 5 p.m. You can make your appointment for your professional portrait, and you will receive your photos on a DVD to take home. They are doing a lighter colored, neutral background. The photographer suggests solid colors are always best, warm or earthy tones will look best. Think jeans and cream, tan, light browns, white and peach. They do not suggest busy prints, neon or bright colors. Dress head to toe - your feet MAY show.


SPONSORSHIPS AVAILABLE: It’s not too late to become a sponsor. We have several sponsor levels that can be made when you register or at www.pmsf.org. Perhaps your family or employer would consider sponsoring a session for $250. If you have questions, contact Veronica Frunzi at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it .


VOLUNTEERING AT THE CONFERENCE: Onsite volunteers are needed in a variety of areas, including registration, ticket sales, the store and setting up/tearing down. Sign up here.


CHILDCARE: The onsite childcare program is FULL but you can get on a waiting list for possible openings. Register with KiddieCorp.


ZUMBA: Angie Foster, a certified Zumba instructor will lead a workout session from 7-8 a.m. Friday, July 22, in the Caribbean ballroom. The workout will be watch and follow and not complicated at all. Be sure to bring your family and friends to be a part of the Zumba Fitness party! Please wear comfortable athletic shoes and clothes you can move in.


KEYNOTE SPEAKER: Ron Fournier, author of “Love That Boy,” on Saturday afternoon will talk about connecting – belatedly – with his special needs son. Parents of children with disabilities are taught to love them despite what makes them different. Fournier will discuss his journey to loving his autistic son because of idiosyncrasies. Fournier is a senior political columnist at National Journal. He previously worked for the Associated Press for 20 years, most recently as its Washington bureau chief.


WALK AND TALK: For adults attending the conference who would like to go for a walk and talk and listen. We may not have answers but just having another person listen is support. Think multi-tasking at its best and you really get your endorphins going! We will meet at the registration desk and go for a local walk at 7 a.m. Wednesday, Thursday, Friday, Saturday and Sunday. It's only an hour and we won't walk too quickly. It’s a great way to start your day.


IN IT TO WIN IT: The are some great items and a few “surprise items,” too. Look for the table in front of the registration area in the conference hall to see the items up for grabs. You can help by donating an item to this event. Items in the past included theme park tickets, iPads, airline tickets, gift cards, jewelry, children’s toys, sports items, quilts, PMS-themed blankets, artwork, small electronics, country/region/state-themed gift baskets and more. For questions or to donate an item, contact Teri Dutts (grandmother to Jack Mancini – PMS child) at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it or (727) 515-1644.


DISNEY TICKETS: If you are looking to buy Disney theme park tickets, you can get “after 3 p.m.” tickets that you can’t buy at the park. You may also find discounts on other tickets.



 

 

There's something for everyone


in this year's conference agenda

 

Science to superheroes pack four days of sessions, fun

 

We've got some great sessions and topics planned for the International Conference and Phelan-McPosium. While we are still finalizing our agenda, here are some sessions we have firmed up:


Wednesday, July 20

Family Fun Day with events including family photos (opportunity to sign up will be available soon), corn hole competition, art therapy and a welcome back reception in the evening.


Thursday, July 21

-- Sibling workshops (separated by ages)

-- Single Parent session

-- Married Parents session led by Rick and Cheryl Wood

-- Caregivers session led by Debbie Graham


The Phelan-McPosium Patient-Centered Outcomes workshop will start after lunch and be the only session going on until we end the day at 5:30pm.


The exciting "In It To Win It" is during our group dinner starting at 6:30pm.


Friday, July 22

Siblings will head off for their field trip to Universal Studios at 8:15am. (This is an optional event. Sign up before it sells out!)


The Phelan-McPosium is the only session going on through lunch.


After lunch, a number of sessions will run concurrently, including:

-- Mom's Session led by Alison Turner and Sue Lomas

-- Dad's session led by Ryan Cox

-- Extended family session led by Debbie Graham

-- "Is a Service Dog Right for Our Family" by Melissa Yetter

-- "Registry Round Up!" What is it? Why do we need your help? How can you benefit from being involved?

-- "Joining a family with PMDS" presented by Susan and David Knott

-- "Coping Skills for Families" presented by Evan Farrer

-- "Transition to Adulthood." Creating a meaningful program for your adult.


The highlight of the night is our "Not Every Superhero Wears a Cape" dance party from 7-10pm. Bring your costume and dance shoes. We will have a DJ and lots of fun for the whole family.


Saturday, July 23

Packed with concurrent sessions, including:

-- "Let's Talk" grandparents session by Teri Dutts and Toni Randazzo

-- "Residential Options," a parent panel discussion

-- "Legislative Advocacy - Building Relations"

-- Genetics and Q&A

-- "PMS-DN: Why Our Kids Are So Much Alike and So Different"

-- Special Education Law and Advocacy

-- Legal Issues Part 1: "Planning After Parents Are Gone" presented by Rick Wood

-- Legal Issues Part 2: "Planning While Parents and Children Are Here" presented by Rick Wood

-- "Protecting Your Back: Strategies for Lifting, Carrying, Changing and Transferring Your PMS Child" led by Tiffany Engle


After a day of great sessions, bring the kids out to the lawn area for a game of whiffle ball starting at 7 p.m. All PMS kids are welcome to play; siblings, parents and caregivers can help out!


Sunday, July 24

"Faith and Crisis" led by Ezra and Rhonda Griffith from 9-10 a.m.

 

Reminder: Registration rates go up June 1




Clinicians encouraged to attend Phelan-McPosium


Learn about quality of life issues for your patients with PMS

 

Dear Clinician,

 

In several weeks we will be holding the Phelan-McPosium: A Patient Centered Outcomes Workshop.  This PCORI-funded meeting will bring together clinicians and researchers with families of individuals with Phelan-McDermid Syndrome at the PMS Family Conference.  The topics will include (1) the genetics of PMS, (2) cognition, learning and development, (3) communication and social behavior, (4) sleep, (5) GI dysfunction, (6) PMS across the lifespan, and (7) epilepsy.  A detailed program will be available the first week of June.  In addition to talks and panel discussions by the experts working in these areas, we will have opportunities for families and clinicians to share their experiences and questions through roundtable discussions and online polling.  We hope the workshop will inspire you to consider how QOL factors might be considered in the care of your patients with PMS.

 

McPosium Dates

Thursday, July 21, 1 pm - Friday, July 22, 12:30 pm

 

Location

Caribe Royale

8101 World Center Drive

Orlando, Florida 32821

www.cariberoyale.com

 

To learn more about the International Family Conference and Phelan McPosium, please see our Family Information Packet and the conference registration website.

 

Poster presentation & award

On Friday morning we will have a poster session.  If you wish to submit a poster abstract, please complete the application.  We will offer a $500 prize for the top poster.

 

Stipend opportunity

We have several $200 stipends for roundtable facilitators.  Please refer to page 23-24 of the program booklet for the program announcement and application.

 

Young investigators & clinicians

We strongly encourage the participation of your students, post-docs, and clinical collaborators.  Please let them know about the opportunity to present a poster and to apply for a stipend.  Since PMSF has never before held a patient-centered outcomes workshop, we feel this will be an ideal occasion for clinicians to connect with each other.

 

Consensus Guidelines

Following the McPosium, we will reconvene to have a brief wrap-up discussion and to begin a conversation about the development of consensus guidelines for PMS.  We will conclude by 5:30 pm.

 

PMS_DN Workshop

If you are interested in learning about the PMS Data Network (PMS_DN), you may wish to arrive at the Caribe on or before Thursday morning.  At 11:30 am, we will hold a “lunch and learn” workshop about how to access the data in the PMS Data Network (PMS_DN) through the i2b2/tranSMART open source platform.  The PMS_DN includes parent-reported data from the PMS Registry and data from electronic health records.  This workshop will be led by Paul Avillach, MD, PhD, HMS Dept. of Biomedical Informatics.  Please RSVP to  This e-mail address is being protected from spambots. You need JavaScript enabled to view it if you wish to attend the workshop.

 

Should you require additional information, please contact me at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

 

We look forward to seeing you in Orlando!

 

Sincerely,

 

Geraldine Bliss

 

 


 


Let your voice be heard


Phelan-McPosium at July conference will give parents

a say in future research into Phelan-McDermid Syndrome


There's something new coming to this July's international conference. It's called the Phelan-McPosium, a patient-centered outcome workshop that will address your concerns about your child with Phelan-McDermid Syndrome through education, polling and discussion.

 

It's also an opportunity to help influence the direction of future research studies.

 

Some of the topics to be discussed include genetics; cognition, learning and development; language, communication and social behavior; sleep; challenging behavior; regression; epilepsy and more.

 

Here's how it'll work:

-- The one-hour sessions over two days will be divided into three, 20-minute blocs.

-- The first will be a review of the session's topic, the second will be small-group discussions and the final 20 minutes will be for a panel of researchers to summarize the takeaway messages and discuss potential research studies to address the most pressing concerns of the patient community.

-- We'll capture your priorities by using the PollEverywhere app and moderators will take notes from the discussions.

-- Parents and caregivers will also have a chance to talk to researchers who are part of the sessions.

 

If you can't attend the conference you still can participate in the workshop. We'll live stream the sessions and you'll be able to submit questions and comments via social media. You'll also be able to use PollEverywhere to log your priorities.

 

There is no extra cost to attend the Phelan-McPosium, it's part of your conference fees to attend the "Embrace, Engage, Empower" International Support Group. You do not have to attend all seven sessions, but your input on as many topics as possible is important to directing research.

 

You'll be hearing more about the Phelan-McPosium as we get closer to the conference in July. If you have questions you can email Geraldine Bliss.

 

We hope to see you at the conference

and the Phelan-McPosium!




 

We need volunteers to make this the best conference ever


By Vicki Camarillo and Veronica Frunzi, Conference Co-Chairs


We anticipate having more than 1,000 attendees at our 10th biennial family conference that will be held July 20-23, 2016 in Orlando.

 

Volunteers are needed to help in various areas (i.e. registration, conference store, Family Fun Day activities, raffle ticket sales, set up, clean up etc.). If a teenage sibling needs service hours, we would welcome their help.

 

Volunteering is a great way to meet and get to know other families while helping the Foundation. Sign up for two-hour shifts via Sign Up Genius.

 

If you have any questions, contact Vicki Camarillo or Veronica Frunzi, co-chairs of the PMSF Conference Planning Committee, at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it .



 

Kyle’s Angels takes to the road


Kelley and Don Thorson’s new Ford Transit Connect van is a traveling billboard for their Kyle’s Angels. The money raised funds the Kyle’s Angels Scholarship Program, which pays hotel costs for qualifying first-time conference attendees. Go here to learn more about Kyle’s Angels and the PMSF Scholarship Program. Both are first-come, first-served and money is still available. Submit your application today.




Airport Pickup for Caribe Royale

 

If you're flying into Orlando International Airport for our International Conference in July, you can get a discounted shuttle ride from

Mears Motor Shuttle to the Caribe Royale, where we'll have all of our meetings.

 

The coupon shaves $4 per person (adult and child) off of your round trip to and from Orlando International Airport

(NOT Orlando Sanford International Airport).

 

Click here to download a printable coupon that you'll need to present to the shuttle driver.
Mears Transportation Coupon.

 



Are you planning your trip to Orlando?

 

By Vicki Camarillo and Veronica Frunzi
Volunteer Conference Co-Chairs

 

We’re about six months away from the 2016 PMSF International Conference. Family packets will be going out soon to help you with your planning.

 

Here is some important information you’ll need:


WHO SHOULD ATTEND? The International Family Conference and Patient Center Outcomes Workshop benefits all families affected by Phelan-McDermid Syndrome. Extended family members are welcome. Whether this is your first or your 10th conference, you will learn, connect with others who share similar experiences and leave with friendships that will last a lifetime.


SCHOLARSHIP OPPORTUNITIES: PMSF has two programs to make it easier for families to attend the conference. Applications will be available soon. The deadline to apply is February 29, 2016

-- Limited scholarships are available to cover conference registration fees.

-- For families who have never attended a conference, the Kyle’s Angels Scholarship Program will help offset costs for hotel accommodations at the Caribe Royale.


WHAT CAN I EXPECT WHEN I ATTEND: The Family Conference and Patient Centered Outcomes workshop is three full days of educational sessions and workshops. To make the most of the conference, participants should plan to spend all day Thursday, Friday and Saturday in educational sessions. We encourage families to come a day or two before the conference or stay a few days afterward to take advantage of the Orlando experience.


NEW FOR 2016: Wednesday’s “Pre-Conference” Family Fun Day. Activities will include art therapy, music therapy, complimentary family photo session and much more! Photo session registration will be on a first come, first served basis via an online registration process that will open in the spring. There will be a welcoming session from 3-5 p.m. for families attending their first conference and a reception for all families at 6:30 pm.


We have some fun, social events too. Siblings can sign up for a field trip to Universal Studios Orlando. Thursday night will have a social event with our “In It To Win It” drawing. Friday night is our “Super Hero” Family Dance Party. This will be a costume party so bring your cape and get ready to dance! And we’ll wrap up Saturday evening with a game of whiffle ball on the lawn with all the kids.


If you haven’t booked your rooms yet, do so today to ensure you get rooms from our group block at the discounted group rate.

 



Use this link to to make your room reservations

 

https://bookings.ihotelier.com/Caribe-Royale-AllSuite-Hotel-and-Convention-Center/bookings.jsp?hotelID=5636&groupID=1485931

 

Money-saving hint #1: Book through our reservations link to avoid the new resort fees of  $19.95 per night plus tax.


Rooms can be booked at our group rates for several days before and after the conference, so you can spend a few extra nights to enjoy the many Orlando area attractions.


Money-saving hint #2: If you want to qualify for some free perks during your stay and earn points, join the STASH Hotel Rewards Program. Sign up for this program before booking your room and then put your STASH number on your reservation to ensure you get your benefits.


Room rates:


>>>  $139 per night plus tax for a suite with two queen beds and a sofa sleeper.

>>>  $199 per night plus tax for a two bedroom/two bathroom villa (rate good for up to four adults per villa).

The group rates are good for stays three days before and three days after the official conference dates so families can plan a vacation around the conference and take advantage of these great rates.

 

IMPORTANT: To make sure you get the latest conference news, please update your contact information by clicking here.


DOWNLOAD THE PMSF APP FOR ANDROID AND APPLE PHONES FOR CONFERENCE UPDATES!



 

Patient workshop gives families more access to researchers

 

By Vicki Camarillo and Veronica Frunzi

Volunteer Conference Co-Chairs

 

The 10th biennial family conference “Embrace, Engage, Empower” is just months away!

 

This international event is the largest gathering of PMS families and will be held July 20-23 at the Caribe Royal Hotel and Conference Center in Orlando, Florida. We’re excited to announce this conference will have something new, a Patient Centered Outcome Workshop, which will have families engaging more with researchers.

 

We are kicking off the conference with a Family Fun Day on Wednesday, July 20, which will include complimentary family portrait sessions, art therapy and more. There will also be a special session for first-time conference attendees in the afternoon and a welcome reception for all families in the evening.

 

Conference sessions will run all day Thursday, July 21, Friday, July 22, and Saturday, July 23. Plan to be at the hotel on all three of those days so you don't miss any of the sessions. We will also have social activities planned for each night to give families a chance to get together.

 

Family packets will be sent out electronically soon to help you with your planning. The PMSF room per night rate is $139 plus tax for a one-bedroom suite and $199 plus tax for a two-bedroom and two-bath villa. To get the PMSF rate, book through the conference reservation link on www.pmsf.org and you’ll avoid paying the resort fee of $19.95 per night. Since many of the villas have already booked up, we’re working with the Caribe Royale to release more villas soon.

 


 

Book your rooms for 2016 family conference


By Vicki Camarillo

Co-chair, Conference Committee


It’s less than nine months until our International Family Conference so we’ll be rolling out plenty of news and information to help you plan your trip.


First and foremost here is the link to reserve your room at the Caribe Royal Hotel and Convention Center in Orlando, Fla.


Our PMSF room rate is $139 a night plus tax for a one-bedroom suite and $199 a night plus tax for a two-bedroom and two-bathroom villa.


The one-bedroom rooms can be reserved with one king bed or two double beds. They also have a sleeper sofa in the living room, which is a separate from the bedroom.


The villas feature a master bedroom with one king bed, a guest bedroom with two double beds and a sleeper sofa in the living room. They also come with a full kitchen and a washer and dryer.


Here’s a money-saving hint: Book through our reservations link to avoid the new resort fees of  $19.95 per night plus tax.


Rooms can be booked at our group rates for several days before and after the conference, so you can spend a few extra nights to enjoy the many Orlando area attractions.


Money-saving hint #2: If you want to qualify for some free perks during your stay and earn points, join the STASH Hotel Rewards Program. Sign up for this program before booking your room and then put your STASH number on your reservation to ensure you get your benefits.


Returning conference attendees will notice a beautiful new Caribe lobby. It was renovated after our 2014 International Family Conference.


While the agenda is taking shape, we do have some events penciled in. There will be a Family Fun Day on Wednesday, July 20, which will include complimentary family portrait sessions, art therapy and more. There also will be a special session for first-time conference attendees in the afternoon.


Conference sessions will run all day Thursday, July 21, Friday, July 22, and Saturday, July 23. Plan to be at the hotel on all three of those days so you don't miss any of the sessions. We will also have a social activity each night to allow families a chance to get together and get to know each other.


 

Last Updated on Sunday, 11 September 2016 15:55
 
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