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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


Don't Let Time Run Out on the Early Bird Discount for the 2011 1p36 DSA Conference!

Group Photo from 2009 Conference

The 2011 1p36 Deletion Support & Awareness Conference is shaping up to be the best ever!  Don't forget to register early so that you can take advantage of the lower registration rate 
before May 15th

Did you know that this year's conference will be the 5th annual conference in the US for families affected by 1p36 Deletion Syndrome!  The first ever conference was the idea of an amazing mom of a child with 1p36 Deletion Syndrome in Florida in 2007!  Families came from all over (even Italy!) to meet each other and listen to speakers.  It was an incredible weekend of learning and sharing.  Parents were often heard saying, "Wow!  This is like a family reunion with people you've never met!"  There was a lot of laughter and tears, camera flashes and smiles.

Ever since then, there has been an annual conference in the US bringing together 1p36 families.  Some are veterans who have never missed a conference and some are new to the group or even the 1p36 Deletion diagnosis.  Many of the parents have been 'friends' on line for months or years and are thrilled to finally meet each other in person.  To be surrounded by so many others that understand exactly what it means to raise a child with 1p36 Deletion Syndrome is a powerful experience. 

Melanie and Angela at Mom's Night Out

Dr Lisa Shaffer presenting
at the 2010 Conference.

We hope you can join us for this wonderful opportunity to learn and connect.  Register Here!

Callie and Mollie after some
water fountain fun.

Attendees at one of the information sessions.

Hope to see you there!


2011 1p36 DSA Conference Registration is OPEN!


On behalf of the 1p36 DSA, we would like to welcome you to the 2011 1p36 DSA Family Conference and Retreat held in Minneapolis-St. Paul. For the past four years, we've welcomed new and old families with members who have 1p36 Chromosome Deletion to gather in learning new information, share our stories and spend time together. This year, we invite you to get away with us as we meet on the beautiful campus of Bethel University in Saint Paul, Minnesota on the shores of Lake Valentine. Located just 20 minutes from both downtown St. Paul and Minneapolis, 25 minutes from MSP International Airport and 30 minutes from the Mall of America, we'll enjoy the comforts of the city and the quiet retreat of Bethel's 245-acre campus. You might notice things look a little different this year. First, we're pleased to offer an "all-inclusive" style retreat complete with lodging, meals, registration fees and activities. You'll find a blend of dynamic speakers with topics ranging from advocacy to education, ideas for adaptations and encouragement to face the daily challenges along with times to relax and enjoy being with our "1p36 Family". Be sure to explore the links to find detailed information on registration, conference details and more about the area. We look forward to "retreating" with you in the Land of 10,000 Lakes!

Beth Hegney and Heather Antoine
2011 1p36 DSA Conference and Retreat Co-Hosts

For more information and to register please visit .





We Need Your Photos!

1p36 Deletion Support & Awareness (1p36 DSA) is working on new video and promotional materials.  We need your photos!  If you have a high quality digital photo of your child with 1p36 Deletion Syndrome that you would allow 1p36 DSA to use for promotional and/or educational purposes, please email it to  

Photos may be used for brochures, flyers, newsletters and other print material as well as on the website or the 1p36 DSA blog.

Types of photos we are looking for:

All ages of 1p36 individuals
Close Ups
Candid Shots
Family photos
Baby photos
Active shots
Photos of 1p36 individuals receiving medical treatment either in hospital or clinic.
1p36 DSA conference photos

Small Print:
By submitting your photo(s), you agree to allow 1p36 DSA to use the photo(s) in digital and print materials for the purpose of promoting 1p36 DSA and to increase awareness or provide education of 1p36 Deletion Syndrome. Permission should be obtained by all subjects in the photo.   All submitted photos may either be used, not used or may be be used at a later date at the discretion of 1p36 DSA.   If you wish to place restrictions on how the photo you have submitted is used such as a time limit or a preference for print or digital media, please specify your wishes in your email when submitting the photo.

Please email if you have any questions.

Thank you for supporting 1p36 Deletion Support & Awareness!


Read the 2011 Winter Edition of the Blue Ribbon Tribune!

The Official Newsletter of 
1p36 Deletion Support & Awareness
Winter 2011


1p36 DSA wants to say Thank You to all our supporters.

Sadly, 1p36 DSA did not win the Pepsi Refresh Grant in October and as we said at the beginning of the month if we didn't win, we are throwing in the towel...for now!  Stay tuned for new opportunities to support 1p36 Deletion Support & Awareness in the future!

The support from 1p36 DSA's voters was phenomenal!  Its apparent that, even though we are a small and newly formed organization, there quite a few folks who support our goals of increasing awareness of 1p36 Deletion Syndrome and providing support to 1p36 families.  There was a lot of competition for the Pepsi Refresh grant money and many very deserving causes won.

That being said, even though 1p36 DSA did not win, we did do a lot to increase awareness of 1p36 Deletion Syndrome and that is our main goal!  So many of you contacted the media, emailed your contact lists and shared  the cause on social networking sites!  Imagine, because all that effort, how many more people are now aware of this rare syndrome!

Thank you so much for your continued support of 1p36 Deletion Support & Awareness. We will continue to update the blog with information regarding our future projects, family stories and other 1p36 Deletion Syndrome news so keep checking back.  Also, many of our Pepsi Refresh Alliance Partners are still hoping to win in November so your votes are still needed to help children with disabilities and chronic illnesses.  We will keep you updated on their progress.