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What is 1p36 Deletion Syndrome?

 

1p36 Deletion Syndrome is a chromosome disorder that can be characterized by moderate to severe intellectual disability, delayed growth, limited speech ability and distinct facial features. It is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. Though many people have never heard of 1p36 Deletion Syndrome, it is the one of the most common chromosome deletions. Learn More

Saturday
Jul192014

2015 Conference Preview

1p36 Deletion Support & Awareness is excited to announce the dates and location of the 2015 1p36 DSA Conference. The conference will be Thursday July 23rd through July 25th and will be hosted at The Wyndham Grand Orlando Resort Bonnet Creek in Orlando, FL. www.wyndhamgrandorlando.com

The Wyndham Grand Orlando Resort Bonnet Creek is an upscale lakeside hotel surrounded by stunning woodlands and the alluring style of sun-kissed Orlando 20 minutes from the Orlando International airport. The Mediterranean-inspired hotel has Lagoon-style swimming pools with pool side cabanas, fire-pits, a pirate ship kiddie pool, lazy river, playgrounds, jogging trail, outdoor hot tubs, a game room and much more!  The hotel also offers three restaurants, two lounges and 24-hour room service.

We have secured a room rate of $139.00 per night plus tax for the conference. This includes access to the amenities already listed as-well-as high-speed internet access in guest rooms, use of the state-of-the-art fitness center and a complimentary shuttle to the Disney Parks and attractions. If you want to extend your stay, this rate is available for 3 days before and 3 days after the conference. You can call 407-390-2300 and mention the 1p36 Deletion conference or click here to make a reservation online. If you are making a reservation online and try to add nights outside of the Pre/post nights or if they have limited availability in pre/post nights it will show as unavailable. If this occurs please call the number above and they can assist you further.

If you did not already know, there is a lot to do in Orlando. The hotel is less than 5 miles from the Walt Disney theme parks including Magic Kingdom, Epcot, Disney’s Hollywood Studios and Animal Kingdom. Nearby, enjoy the shops, nightlife and entertainment thrills at Downtown Disney or Universal’s City Walk. To learn more about Orlando local attractions, visit the Visit Orlando website @ www.visitorlando.com/things-to-do/

As we get closer to the conference, more information will be provided on meals, activities, events and speakers.  Registration for the conference will be available in early 2015. We are very excited about the 9th 1p36 DSA conference. We know it will be a magical event!

Wednesday
Jul022014

2014 Conference Agenda Announced

After a lot of hard work by Tamara Lee and Melissa MacKendrick, the 2014 1p36 Deletion Support & Awareness conference agenda is finalized. You can view it by clicking here. The conference is only two weeks away and we are all so excited to host the over 65 families that will be attending (by the way that equates to over 300 people). It is sure to be a weekend of meeting new friends and family and learning  about 1p36 Deletion Syndrome and how we can all help our 1p kids to be all they can be.

This year will be larger than last

Monday
Jun022014

Research Opportunity at 1p36 DSA conference

The attendees of the 1p36 DSA Annual conference have a wonderful opportunity to help with research involving 1p36 Deletion Syndrome. Genetic Counseling student Cassandra Bac in coordination with Dr. Robert Hopkin and Cinicannati Children's Hospital Division of Human Genetics, Heart Institute and the Division of Speech-Language Pathology are conducting a study about the speech and Heart function of people with 1p36 Deletion Syndrome during the annual conference in Mason, OH July 17-20, 2014.

Complete information about the study can be found by downloading the study information sheet at here You may also contact Cassie Bac at cassandra.bac@cchmc.org, If you are interested in participating in the study please contact Cassie at the above email.

1p36 DSA does not specifically endorse any specific research project but we do encourage families to look over this research opportunity to see if it is something they would like to participate in. The more our 1p36 community is involved in and supportive of research, the more the medical community can learn about 1p36 Deletion syndrome.

Saturday
Mar152014

2014 Conference Registration and Scholarship information

1p36 Deletion Support & Awareness is pleased to announce that the 2014 conference registration is now open. You can click here to go to the registration page. Early bird prices will end May 15th. We can't wait to see everyone and it will be here before you know it. More details about the conference can be found on the conference page.

We are also offering scholarships to this years conference again. We firmly believe that attending a 1p36 DSA conference can be a life changing experience but know that it can be financially challenging for many families. That is why we have set up a scholarship program for those who have never had the chance to attend a conference. For details about the scholarship program please click here. Scholarship applications must be received by April 19th, 2014.

Sunday
Dec152013

Guidestar and Greatnonprofit Awards

For Immediate Release

1p36 Deletion Support & Awareness Has Reached the GuideStar Exchange Bronze Participation Level as a Demonstration of Its Commitment to Transparency

BEND, OR1P36 DELETION SUPPORT & AWARENESS has received the GuideStar Exchange Bronze participation level, a leading symbol of transparency and accountability provided by GuideStar USA, Inc., the premier source of nonprofit information. This level demonstrates 1p36 DSA's deep commitment to nonprofit transparency and accountability.

"We have worked hard to showcase our progress toward our mission, and our long-held belief in being transparent about our work, to our constituents," said Ken Shirtcliff. "As a GuideStar Exchange participant, we use their platform to share a wealth of up-to-date information about our work to our supporters and GuideStar's immense online audience of nonprofits, grantmakers, individual donors, and the media."

In order to be awarded the GuideStar Exchange logo, 1p36 DSA had to fill out every required field of our nonprofit report page on www.guidestar.org for the Bronze level of participation.

"I encourage you to check out our profile on GuideStar to see what we're all about," added Ken. "We are engaged in exciting initiatives, and we are thrilled to have another platform for communicating our advancement and progress."

About the GuideStar Exchange

The GuideStar Exchange is an initiative designed to connect nonprofits with current and potential supporters. With millions of people coming to GuideStar to learn more about nonprofit organizations, the GuideStar Exchange allows nonprofits to share a wealth of up-to-date information with GuideStar's many audiences. Becoming a GuideStar Exchange participant is free of charge. To join, organizations need to update their report pages, completing all required fields for participation. The GuideStar Exchange level logos, acknowledged as symbols of transparency in the nonprofit sector, are displayed on all Exchange participants' nonprofit reports.

Our mission is to help individuals affected by chromosome 1p36 abnormalities overcome the obstacles they face to be able to lead healthy, happy and productive lives. We do this by providing support and education to their families and increasing awareness of chromosome 1p36 abnormalities in the public and medical community.