Search

Loading..
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

Saturday
Mar122016

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 2016-1p36-conference.eventbrite.com 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.

 

 

Thursday
Dec032015

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 http://www.1p36dsa.org/merchandise/ While you are there we also have some other great merchandise you can order. Hurry Supplies are limited.

Wednesday
Nov042015

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

Thursday
Oct222015

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 1p36calendar@gmail.com
  • 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.
Monday
Sep282015

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.