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Giving Challenge countdown begins


Let's Rise to the Challenge and threepeat


Here are details on how we can make this year's

worldwide fundraising drive a huge success

 

Hello PMSF families and friends,


The Toronto Maple Leafs have done it in hockey. The Chicago Bulls in basketball and the Williams sisters have done it at Wimbledon. Now, it’s the Phelan-McDermid Syndrome Foundation’s turn to do the same. Next month is the 2015 Giving Challenge. We were the champions the past two years. With your help our team of families can threepeat and join a venerable list of the all-time best teams.

Read more...
 

 

Watch: PMS_Data Network webinar


Pick up some tips on collecting medical reocrds


You can watch the most recent Phelan-McDermid Syndrome Foundation webinar about the PMS_Data Network and learn tips on collecting your child's medical records. The webinar is just over half an hour long.

To watch the webinar, click here.

 

Watch: Developmental Synaptopathies

Consortium webinar

Learn about the upcoming clinical research study

 

Nearly 100 people logged on for the Phelan-McDermid Syndrome Foundation's webinar about the Developmental Synaptopathies Consortium clinical research study.

We would like to thank Dr. Alex Kolevzon of the Icahn School of Medicine at Mt. Sinai and Dr. Mustafa Sahin at Harvard Medical School for their time and insight.

If you weren't able to participate, you can watch it here. It's just over half an hour long.

The study, to be performed at six sites around the country, targets those with PMS who are 3-21 years old and have a deletion or mutation in the SHANK3 gene, which includes rings or mosaics. Assessments will take two-three days for parent reporting and medical testing at Mt. Sinai in New York; Boston Children's; Rush in Chicago; NIMH in Bethesda, Maryland; University of Texas Southwestern; and Stanford.

International families can participate, as well, Kolevzon said. "There's no exclusion. ... We're not going to discriminate against international participants," he said.

But, Sahin added, "based upon the analysis we're doing, we can only take English-speaking patients just for the requirements of keeping everything standardized."

Making travel a bit easier will be money from the Foundation to cover some travel costs for families.

Providing funding for travel is "one of the ways the (PMS) Foundation is supporting this project," said Geraldine Bliss, PMSF Research Support Committee Chair. "We ... wanted to make sure that there wouldn't be a huge travel burden on families."

Sahin said the PMS Foundation was key to getting the consortium funded.

"I want to thank the Phelan-McDermid Syndrome Foundation for really making the grant possible for us to be able to apply," he said. "We really wouldn't have been able to get this grant funded, without (PMSF's) help, from the NIH."

 

GET IN TOUCH: Click here for a list of contacts at the medical

facilities that are part of the consortium.



 

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

 


 

PMS_DN iPad raffle July winners announced

 

By Jackie Malasky

Family Engagement Specialist

PMS International Registry Team


The first two winners of the iPad Raffle have been chosen!


Congratulations to Kim Lant and Jessica Swanson. After uploading medical recoreds to the PMS Data Network, they were selectd from among all the participants to receive an iPad Air and durable case.


There will be two more iPads and cases raffled off at the beginning of September.


Entering the contest is easy, and free. Through CareSync you can obtain all of your child’s medical records and maintain them in one centralized place.


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. 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.


Once set up, your CareSync account will be part of the PMS_Data Network and will qualify you to win one of two iPad Airs with a durable case. There are a few ways to enter:


-- You get one entry for being part of the Registry and updating your consent preferences. Make sure the new consent questions are answered. These new questions were posted in July 2014.

-- 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 -- 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.


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.


Entries for the next two winners will be closed for 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'll announce the names in early September.

 

LEARN MORE: Details about the raffle can be found

on the iPad raffle event page on Facebook.

 


 

PMSF applauds 25 years of progress

under 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.”

 

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.


 


 

 

 

 
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NEW! Mark your calendar

 

Make a note of these significant upcoming events.

 

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

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

 

Aug. 18-20 National Institute of Mental Health Outreach Partnership Program. PMSF parent Megan O'Boyle will be part of a panel discussion at meeting in Washington, D.C.

 

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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