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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

Tuesday
Nov222016

Do all your Christmas shopping at the 1p36 Store

With Christmas fast approaching, we wanted to remind everyone about all of the 1p36 merchandise we have in stock. We have new Silipint "Base" tumblers that are virtually indestructible (great for all of our kiddos). We also have some really nice, high quality hats in different styles and colors. We still have some "limited edition" 2016 conference t-shirts on sale. Whether you went to the conference and want another shirt or if you weren't able to attend but would like to show off your 1p36 pride, get yours while you can.

All of our merchandise makes for great gifts for yourself or your loved ones as well as for teacher gifts for the holiday season. To order your merchandise just go to the 1p36 store.

If you are looking for a wide variety of clothing with the 1p36 logo you can also go to the 1p36 Spreadshirt store. 1p36 DSA gets a portion of every sale.

Did you also know that when you shop at smile.amazon.com Amazon will donate .5% of your purchase and it doesn't cost a thing for you to do it. To find our more go to smile.amazon.com

Sunday
Nov202016

2017 Conference Preview

The 11th annual 1p36 Deletion Support and Awareness conference will be held in Baltimore, Maryland, USA on Thursday, August 3 through Saturday, August 5, 2017.

We will be staying at the Lord Baltimore Hotel in the middle of downtown.  An announcement will be made in early 2017 when rooms are available for booking through our group.  In the meantime, take a look at the hotel website here:  http://www.lordbaltimorehotel.com/

Scott and I can’t wait to show off our city to you!  We will be several blocks from the Inner Harbor tourist district.  It will be a short walk to catch an Orioles game at Camden Yards, check out Ravens stadium, paddle a dragon boat, or tour Harborplace attractions like The National Aquarium, the Science Center, the Constellation, or Ripley’s Believe it or Not.  A tiny bit further afield is Fort McHenry, where the Star Spangled Banner was born, or the historic neighborhoods of Federal Hill, Canton, and Fell’s Point--each with their own unique sights and shops and restaurants.

If you need a day trip, check out the history and monuments of Washington, DC less than an hour to the south, or Philadelphia 2 hours to the  north.  The beautiful town of Annapolis and the Naval Academy are close by as are the Civil War battlefields in Antietam, MD, Gettysburg, PA and Fredericksburg in VA.  For more information, check out http://baltimore.org/ or http://www.visitmaryland.org/

If you have attended previous conferences, we look forward to seeing you again and picking up where we left off.  If you are newly diagnosed or have never been to a conference, we look forward to meeting you, your family, and your 1p36er.  We  promise you will learn important information and make friendships that will last a lifetime. 

We will post more information about the conference as it becomes available. Mark your calendars!  We look forward to seeing you next summer!

Jennifer and Scott Winiecki (Wendy’s parents)

Saturday
Jul022016

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.

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.