Print Friendly and PDF


Translate Website

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


Fundraising now for the 2016 1p36 DSA conference in San Diego, CA

1p36  is a syndrome that affects thousands of children, teens, adults and their families. 1p36 Deletion Syndrome affects up to 1 in 5000 births. It is a genetic condition where a small amount of genetic material is missing (deleted) at the tip of the short arm of the chromosome 1.

This missing chromosome results in a variety of issues, including:

·      Seizure disorder
·      Growth/feeding problems
·      Developmental and intellectual disabilities
·      Congenital malformations
·      Cardiomyopathy and thyroid issues

These are just a few of the many issues that affect those born with 1p36 Deletion Syndrome and their families.

Please help us bring families and communities together in support and hope.

The 1p36 Deletion Support & Awareness Organization will be holding its annual conference at the Four Points Sheraton in San Diego, CA from July 28th- July 30th, 2016.

This conference is the only one of its kind where parents and families of those with 1p36 Deletion Syndrome and medical professionals with an interest in the syndrome can come together from all over the world, under one roof, to learn the most current, recommended care and advocacy strategies and hear first-hand the latest in research.  All money donated goes directly to helping families in need.

Your generous donation can help change lives today — and tomorrow.

We need your help to make this conference a success. Our goal is to raise $20,000 to help cover the cost of putting on the conference. We are designated as tax-exempt under section [501(c) 3] of the Internal Revenue Code. Contributions are tax-deductible to the fullest extent of the law.

Thank you for supporting 1p36 Deletion Support and Awareness.


At the 2015 1p36 DSA Conference "All our kids were Superheros"

Videos of all the 2015 Conference presentations can be found here.

The 9th annual 1p36 Deletion Support & Awareness Conference was held in Orlando, Florida this year.  Thanks to our gathering of “Chromies” at the Wyndham Grand at Bonnet Creek, it truly was “the happiest place on earth!”  We appreciate all who participated in our Captain Chromosome Virtual Run as 100% of the proceeds went to 1p36 DSA to help offset some of the cost of our conference.  I am sure you’ll all agree the medals are amazing, and I know we all wear them proudly as we support the best team we’ve been blessed to be a part of, “Go Team 1p36!”  Please keep an eye out for more opportunities to run, donate, and earn pins for your lanyard all to support 1p36 DSA!! 

Throughout the conference, you could really feel the theme “Family & Super Heroes,” the overflow of love is evident the minute you spot another 1p36 family member.  The halls of the hotel and conference area were filled with love and laughter as everyone met new families and reunited with longtime friends and chromies alike.  We all proudly put on our Captain Chromosome shirts to recognize, “All of our kids are Super Heroes!”  After our Family Introductions, Group Photo and Celebration Ceremony, we ended the night with an extra special pizza party where Spider-Man & Elsa joined us for our Family Fun Event!  Faces were painted, balloon animals were everywhere, and we even had our own 1p36 Family Sing-a-long with Elsa!!  It truly was an evening of fun that will forever be etched in our minds and hearts.

As Friday morning arrived, our families filled the ballroom ready to learn more about 1p36 Deletion Syndrome.  We were blessed to have Dr. Scott & Dr. Hopkin return to speak on “the Genetics of 1p36,” the new study that will be done on family impact of a child with 1p36 deletion syndrome, as well as the 2014 hearing study results.  In addition, we had Kim Hazelton of come and speak on “Sensory Strategies for Home and Community.”  With her extensive work as an Occupational Therapist, specializing in Sensory Processing, she was able to give many of our families’ guidance to ease their children both at home and in public.  We then rounded out the afternoon with our very own 1p36 parent, Seth Hyman speaking on advocating for your child.  He started with a poem by Emily Perl Kingsley called, “Welcome to Holland,” and shared how he and his family have been advocating for their daughter who has 1p36 Deletion Syndrome.  The night ended with Mom & Dad Luau events, full of laughter and fun, parents had the chance to connect and relax together. 

After having breakfast Saturday morning, Nancy Harrington joined us to speak on “Using the iPad for Aided Communication.” She was able to cover a number of apps that can be used to help our children who are non-verbal.  Following the discussion on communication devices, a 1p36 family favorite, the panel discussion and open question time began.  Many families received valuable information not only in the panel, but the entire conference as a whole.  The conference wrapped up with an announcement that our 10th Annual Conference will be held in San Diego, California next July!  Details and venue location and dates are in the works, so keep an eye out for more details in the coming months.  Lastly, our families spent time at the pool for fun and games.  This year we have all seen the importance of our 1p36 family bond as we spent time together throughout the week of our conference.  The hotel staff commented how this was never seen as a conference to them, each person described the “Family Bond” and “Family Reunion” feel to the atmosphere created by just all being together to celebrate our Super Heroes!  We invaded Orlando and made it the “happiest place on earth,” and now we will countdown until next year when we all meet again in San Diego!!


 If you attended the conference, please click here to fill out the 2015 Conference Survey.


Can't Wait to See Everyone

The 2015 1p36 DSA conference starts next week and we can't wait to see everyone. We are going to have a great turnout with around 60 families registered. The conference agenda can be downloaded here. You can also download the conference YAPP app on your mobile device by going to  Just follow direction on the YAPP website. Once you download the app you can see the agenda, hotel information, directions and more.


Have you met Captain Chromosome?

Captain Chromosome invites you to run or walk your way to support 1p36 DSA!!!! Announcing the Captain Chromosome Virtual Fun Run June 15 through June 30th. How does it work? A virtual run means that anyone, no matter who you are or where you are, can participate and show support for 1p36 DSA. Here is what you need to do:
1. Like the Captain Chromosome Virtual Fun Run page.
2. Decide on a day between June 15th and June 30th for your walk/run and then register for the run here:
3. Invite your family and friends to join you!
4. Post pictures of your walk/run on the Captain Chromosome Virtual Fun Run Facebook Page and be eligible for fun prizes!

To learn more about Captain Chromosome and to follow his adventures go to



2015 1p36 DSA conference registration now open

After a lot of hard work we are pleased to announce that registration for the 2015 1p36 Deletion Support & Awareness Conference is now open. We are expecting to have a wonderful time with a fantastic turnout. Last year we had almost 350 people attend representing around 75 families and we hope to seen that many of you, if not more, attend this year.