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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

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.

Friday
Nov222013

2014 Calendars now on sale and help 1p36 DSA while you shop

Did you know that there are many ways that you can earn money for 1p36 Deletion Support & Awareness while you are doing your Christmas shopping online this year.

The new 1p36 DSA merchandise store is now open and the 2014 1p36 Deletion Support & Awareness Calendars are hot off the press. We also have hats, magnets, bows, wristbands and more. All profits from these items go directly to 1p36 DSA.

By creating an account with iGive.com, you can shop at the stores you know and love - over 1300!. A percentage of what you spend is donated to 1p36 DSA (on average 3%). The stores pay for it all. You never pay more, and sometimes pay less with coupons and deals. The optional iGive Button is a simple web browser app, easy to install and uninstall. It automatically kicks in at participating stores. Don't want the app? Just start your shopping trips by going to iGive.com. Shop normally (no special codes, no special anything) at any of over 1300 stores. The Button works in the background to let them know you're helping when you shop.

You can also earn money for 1p36 DSA by shopping at smile.amazon.com. AmazonSmile is a simple and automatic way for you to support 1p36 DSA every time you shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to 1p36 DSA.