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

PMSF International Family, Research Conference


July 20-23, 2016, in Orlando, Fla.


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


JUST ANNOUNCED: Room Rates

 



PMSF applauds 25 years of progress made

under the Americans with Disabilities Act


The Phelan-McDermid Syndrome Foundation celebrates the 25th anniversary of the passage of the Americans with Disabilities Act, which has made communities across the United States more accessible for those with special needs.


The ADA, passed on July 26, 1990, has raised awareness of the respect everyone deserves in their daily lives, regardless of their level of disability. The Americans with Disabilities Act has vastly improved the lives of countless people, their families and caretakers, allowing for greater access to education, public places and community resources that are a right for everyone.


“The Phelan-McDermid Syndrome Foundation and the families we support call for all Americans to continue to break down barriers to inclusion and push everyone to improve the social acceptance of everyone with mental and physical disabilities,” said Susan Lomas, President of the Foundation’s Board of Directors.


“Passage of the Americans with Disabilities Act was a watershed moment for affirming the dignity everyone with special needs deserves in their lives,” said Nick Assendelft, Vice President of the Phelan-McDermid Syndrome Foundation’s Board of Directors. “In the next 25 years, we hope our children will live in a world where everyone is accepted and the beliefs embodied in the Americans with Disabilities Act are a way of life and not a legal mandate.”


ADA marks quarter century

of helping those with special needs


By Disability.gov

 

On July 26, the Americans with Disabilities Act will celebrate its 25th anniversary. The hard work of advocates, legislators and other founding men and women who had a hand in this historical piece of legislation will be recognized, in addition to the law itself. Their tireless efforts led to inclusion and accessibility for people with disabilities after years of discrimination.

 

The impact of the ADA can be seen in the lives it has changed throughout the past 25 years. This landmark legislation helps protect the rights of people with disabilities in five key areas: employment, state and local government facilities and services, public accommodations, telecommunications and transportation. The ADA not only protects people with disabilities from discrimination, but also allows them to fully participate in the workforce and their communities.


LEARN MORE: About the ADA, click hereAbout the ADA Legacy Project, click here.

List of ADA anniversary events, click here.

LEARN MORE: 10 things to know about the Americans with Disabilities Act.




Use CareSync to easily upload medical records

to quality for PMS_DN iPad raffle

 

By Jackie Malasky

Family Engagement Specialist

PMS International Registry Team


Your chance to enter the iPad raffle just got a whole lot easier.


Through CareSync you can obtain all of your child’s medical records and maintain them in one centralized place.


It’s free – and easy.


We have a limited number of spots so contact me as soon as possible! All it takes is a brief tutorial of the website with me, listing your doctor's names and you are good to go.


Accounts in CareSync have been activated and parents are listing doctors. If you don't already have a CareSync account, you know someone who does, so start asking around! For one family, it took only one hour to talk with me and enter in all their doctors.


This is important for the Foundation and for you. Please consider doing it today. Contact me at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or find me on Facebook with questions and to get started.


Your CareSync account is now part of the PMS_Data Network and will qualify you to win one of four iPad Airs with a durable case. There are a few ways to enter the raffle:


-- You get one entry for being part of the Registry and updating your consent preferences. Just being part of the Registry isn’t enough; you will need to make sure the new consent questions are answered. These new questions were posted in July 2014. If you haven’t logged in since then, you will be alerted to make those updates.

-- You get one entry for each medical record you upload to ShareFile, up to 10 records. If you provide 11 records or more, you get a bonus entry! But don’t stop there -- we are encouraging you to submit as many records as possible.

-- Creating a CareSync account will allow you to obtain medical records for your child and have access to these records forever.


Two winners will be selected at the end of July and two winners at the end of August. Entries will be closed for the July raffle at 11:59 p.m. EDT July 20 and the August raffle at 11:59 PM EDT Aug. 20. It can take time to request an electronic format of your child’s medical records so don’t wait until the last minute.


We are defining a record as being from either a unique doctor or a unique date of appointment. These records include clinical notes, genetic reports, microarrays, etc. and can be in pdf, jpeg, document, or other format. Our secure ShareFile system will allow you to upload and store your medical records.



 

New PMS clinical research study launching;

register for Aug. 4 webinar for details

 

We are very pleased to announce the upcoming launch of the Developmental Synaptopathies Consortium, a new clinical research study for people with PMS.


PMSF will be holding a webinar at noon EDT Tuesday, Aug. 4, to tell you about the DSC, site locations and who can take part. To register for the webinar, click here.


After registering, you will receive a confirmation email with information about joining the webinar. Please note the link to join the webinar is unique to you. Do not share this link with other people, or you will be disconnected from the webinar when they log on with your link.



 

Traveling this summer with a child who has PMS?

Planning can relieve some of the stress

 

By Tony Samuel

Father to Nadia

 

Summer break is upon us and traveling with children who have Phelan-McDermid Syndrome or autism comes with its own special challenges.

 

Vacation time requires advance planning and thorough execution. For Phelan McDermid Syndrome families, weeks and even months of planning is critical to ensure a successful vacation.

 

Having a checklist will help to make the vacation experience great for all members of the family. It's best to reach out to the hotels, resorts and theme parks etc. to see if special accommodations can be made for our children. The guest relations department may be able to help.

 

Some theme parks and recreational areas may have special wristbands for those with disabilities. Special need families may also be able to skip the line and get VIP treatment.  It's important to have a note from your primary family doctor explaining your child's specific condition, along with any recommendations. Also, bring along any appropriate medical documentation should your child have a medical incident and you're helped by emergency personnel who might not be familiar with PMS.

 

Special toys and blankets must be packed to make our children feel at home. As with other autism related disorders, PMS kids thrive on structure and routine activities. Even though they may be away from home, it's important to have a semblance of normalcy. At home routines need to be incorporated into the vacation experience.

 

For our children with sensory issues, families must ensure ear plugs and headphones are packed with other essentials. We should also have a recent photo of our child in case she happens to wander off.

 

Is your child still in diapers, like so many PMS kids? If they have a special size or brand that you don't know will be available at stores at your destination, check with your hotel to see if you can ship some ahead of time so you don't need to pack so many and they'll be waiting for you at your arrival. Otherwise, do some research in the city to which you are going and contact some medical supply stores to see if they carry your brand or style.

 

If you're the parent of a child older than 18, don't forget to pack your guardianship documents and a state-issued ID to prove you have the authority to make decisions for your adult child.

 

Wings for Autism is a special program that was developed at Boston Logan Airport and it now has affiliates across the country, where families are able to get a free airport rehearsal ahead of their trip. Families can experience the entire airport boarding experience, including sitting on a runway with the plane's engine on. Although your child may not cooperate fully at first, it's still a great opportunity to experience the airport boarding process in a safe and healthy environment.

 

With our daughter Nadia, we travel with her iPad, DVD player, toys, books and accessory chargers to ensure she is having a good time. Although Nadia is not ready for a plane trip, we find opportunities to travel by car.

 

A successful vacation requires preparation. PMS kids can enjoy traveling and families can have fun!



MORE TIPS: Parenting Special Needs magazine offers these 8 things to consider

when planning summer break for your special needs family member.


PSN magazine also offers these 7 special accessible vacation spots.




 

 

Global Partners trip to Europe was moving, fulfilling, a milestone

 

By Susan Lomas

President, Phelan-McDermid Syndrome Foundation


This trip in March 2015 was long. And, this trip was fabulous. I feel the same way I feel after every conference. Only it was four conferences in a row.


Dr. Katy Phelan and I visited with four international groups on our trip. It was wonderful to meet the families. Each group is excited and enthusiastic to learn from us and to collaborate with us. The opportunities we have with each country to share resources, grow research and promote awareness are many. We had our first day-long Global Partner meeting with seven country representatives attending with two on the phone and one additional country rep sending in answers via email.


Our families are passionate. Our families are kind and loving and eager to help not only their own child but all those affected by PMS. Language does not change our bond.


I cannot thank all of our host families enough: Frederique and Francoise in France, Alison and Kelly in the United Kingdom, Carlo, Chiara and Saverio in Italy and Norma and Juan in Spain. We are so ever grateful for your kindnesses and your passion. I also must mention what a pleasure it was to spend time with Rich's Tia and Teo and cousins!


And to those who attended our first daylong Global Partner meeting, thank you for your determination to collaborate and recognize that we are stronger with a unified mission and voice. It is so moving to be determined to create such impact.


An embrace to all of the families. I know some of you are just starting this journey but I hope, after these gatherings, you know, you are not alone.


It has been fantastique, fabulous, fantastico, magnifico!


The most love I want to give is to my husband, Ricardo, and to my Sammy for caring so deeply for this group of families and for so very much for our family that I was able to be away so long.


Merci, Cheers, Grazie, Gracias!


Related article: UK families mark first anniversary with business, family meetings

 

 

 



Foundation unveils new logo that represents

our worldwide communities of influence

PLEASE CLICK ON THE PMSF LOGO BELOW FOR A VIDEO MESSAGE
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NEW! Mark your calendar

 

Make a note of these significant upcoming events.


July 25 Region 1 South Family Picnic, 12-4 p.m. Coyote Pointe Recreation Area / Magic Mountain Playground Picnic Table #18, San Mateo, Calif., 94401.

https://parks.smcgov.org/

coyote-point-recreation-area

 

July 26 25th anniversary of the passage of the Americans With Disabilites Act, which helps to protect the rights of those with disabilities. http://www.ada.gov

https://adata.org/ada-anniversary/events

 

Aug. 3 PMSF Board of Directors conference call

 

Aug. 3 - Sept. 3 Rare Disease Legislative Advocates' 2nd annual In-District Lobby Days

rareadvocates.org/in-district-lobby-days/

 

Aug. 5 Rare Disease Legislative Advocates' 2nd annual In-District Lobby Days webinar

rareadvocates.org/in-district-lobby-days/

 

Aug. 22 Region 9 Logan’s Heroes Motorcycle Ride and Auction fundraiser, Davison, Mich.

 

Aug. 30 Not sure if you want to become a registered member of the PMS Foundation? It's free, and there are lots of benefits? Follow the Membership link in the menu list on the left side of this page.

 

Sept. 1-2 Giving Challenge

 

Sept. 8-9 National Institiute of Neurological Disorders and Stroke ninth annual NINDS Noprofit Forum, Bethesda, Maryland. Panel discussions on patient registries, translational research, partnering with industry and clinical trials.

 

Sept. 15 Did you update your profile in the PMS International Registry? Do it before summer arrives.


Sept. 19 Hope and Help Gala, The Resort at Pelican Hill, Newport Coast, Calif. Providing hope and help for individuals and families affected by autism through clinical care, education and research. http:/hopeandhelpgala.org


Sept. 24-25 Global Genes Rare Patient Advocacy Summit, Hyatt Regency, Huntington Beach, Calif.

 

Sept. 27-29 140th Annual Meeting of The American Neurological Association, Chicago

 

Oct. 10 Thinking about year-end gifts for friends, teaches or neighbors? Shop online using iGive.com or Amazon Smile and a portion of your total goes to the PMS Foundation.

 

Oct. 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.

 

Oct. 16-17 PMSF Board of Directors meeting at Foundation office in Venice, Fla.

 

Oct. 17-21 Neuroscience 2015, the Society for Neuroscience Annual Meeting, McCormick Place, Chicago

 

Oct. 19 The American Brain Coalition Fall Membership Meeting in Chicago


Oct. 23 Region 8 Australia Cocktail Party, TAFE Queensland, Brisbane, 66 Ernest Street, South Brisbane, raffle, silent auction, cash bar


November Starting your holiday shopping? Shop iGive.com or Amazon Smiles and choose Phelan-McDermid Syndrome Foundation as your charity of choice.


November Region 16 meeting


Nov. 26 Thanksgiving Day in United States


Dec. 25 Christmas Day


2016


Jan. 1 New Year's Day


Feb. 26 World Rare Disease Day


April National Autsim Awareness Month


April 2 World Autims Awareness Day


May Mental Health Awareness Month

 

July 20-23, 2016 PMSF International Conference, Caribe Royale Hotel and Conference Center, Orlando, Florida

 

September World Alzheimer's Month

 

Sept. 21 World Alzheimer's Day

 

October Learning Disabilities Awareness Month


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