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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


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, 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.


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.


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 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.


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, 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 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 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, you’ll find the exact same low prices, vast selection and convenient shopping experience as, with the added bonus that Amazon will donate a portion of the purchase price to 1p36 DSA.


Caregiver Quality of Life Survey

In an effort to understand the needs and challenges that parents and caregivers face in raising a child/family member with 1p36 Deletion Syndrome, we are conducting our first ever Caregiver Quality of Life Survey.  The information you provide in this survey will help 1p36 Deletion Support & Awareness better serve our community by identifying needs, determining resources, and providing support. Your responses to these questions will be anonymous and will be combined with other members of our community.  The topics we will cover include:  Basic demographics, Childcare, Self-care, Support, Planning for the Future, Family Relations, Social Life, Work life, Psychological Well Being, and Sharing Resources. It should take between 10-15 minutes to complete this survey.  The survey will only remain open until December 8th, so please take the time now to complete it.  We really value your opinion and experiences.

We are asking all parents and primary caregivers of a person with 1p36 Deletion Syndrome to fill out this survey. We encourage both moms and dads to participate as each person can share a different perspective on how raising a child with 1p36 Deletion Syndrome affects them. To complete the survey, please go to Please feel free to forward this link to any other 1p36 caregivers who may not know about the survey. 

If you have any question or concerns about the survey please contact board member Tod Oliver at