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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


Want to win a 1p36 Hand Crafted Quilt?

As we look forward to the 10th Annual 1p36 Conference we are really happy to be able to raffle off a beautiful hand crafted 1p36 dsa quilt. This quilt is hand made by Dianna Storck, who is the aunt to Wendy Winiecki's who has 1p36 Deletion Syndrome. This handcrafted quilt features the 1p36 DSA logo appliquéd in the center panel. The borders are split rectangle and migrating geese patterns in the colors of the logo. It measures 54" by 64".  The backing is a soft fleecy fabric called Minky in orange (which is Wendy Winiecki approved)... We will be selling raffle tickets online through July 27th and we will also be selling them at the conference through July 30th. The raffle winner will be drawn July 30th at the conference and if the winner is not in attendance we will ship the quilt at no charge to the winner. Online raffle ticket purchases can be made at the 1p36 DSA mechandise store.


2016 Conference Registration and Scholarship Application

Registration for the 2016 1p36 Deletion Support & Awareness Annual Conference in San Diego, CA July 28-30th is now open. To go directly to the registration page you can go to for general information about the conference including hotel reservation information please click here.

We are also very proud to be able to offer 6 scholarships to attend the 2016 Annual conference. For more information and to fill out the application just go here.




2016 1p36 Calendar now available.

Alright everyone, the big day is here. The 2016 1p36 DSA Calendar is now available for purchase. We have a limited number of these calendars so order yours today. Buy one for yourself and a couple to give away. They make a great gift and you get to enjoy it all year long. Just visit While you are there we also have some other great merchandise you can order. Hurry Supplies are limited.


1p36 Winter Sock Fundraiser

We have a really awesome new fundraiser to announce. "1p36 Winter Socks!!!!" Just click on the link below to pre-order yours now. Special thanks to AreYouKidding and Yessenia "Jesse" Gonzalez


Time to submit your calendar photos

 It is that time of year again!! Time to collect photos for our annual calendar. We are hoping to have a Captain Chromosome theme this year so if you have a picture of your child with Captain Chromosome or dressed as a super hero please consider sending that one.

  • The deadline is October 30th.
  • Send ONE picture. Only ONE per child.
  • The picture should be of your child ONLY.
  • Send picture to
  • Please include your child's first name and last initial as well as their age.
When pictures are received, you may not get a confirmation until a few days before the deadline.