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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

Wednesday
Jan112017

Has your child or loved one been diagnosed with 1p36 Deletion Syndrome? WELCOME

Welcome to all of our newly-diagnosed families!  We are sure you have many questions regarding 1p36 Deletion Syndrome and the 1p36 Deletion Support Awareness community is here to help!

First of all, know that you are not alone.  We are a large network of families and friends who have loved ones with 1p36 Deletion Syndrome and we are here to help you.  If you haven’t already, please ask to join our Facebook forum where you can connect with other families.  https://www.facebook.com/groups/1p36dsa .

You will want to know some basic information about your child’s diagnosis and you will want to know what doctors you need to see, etc.  That information can be found on our website, under “About 1p36 Deletion Syndrome.”  There are also journal articles under “Resources” that you can share with your child’s physician.  If you have a specific question, you can always use the “Contact Us” blue button on our website to contact the organization and be directed to more information.

We sponsor an annual national conference where 1p36 families get together to learn more about the syndrome and to just spend time with people who “get it.”  This year’s conference will be held August 3-5 in Baltimore.  Check back on our website under “For Families—Conferences” for more information as it becomes available.  We’d love to meet you and your 1p36 child!  The cost is usually modest and we promise you will have an amazing time!

We also have a 1p36 DSA store on our website where you can purchase items with our logo. This helps both spread awareness and raise funds, as all profits go to 1p36DSA.

Remember—every 1p36 child is unique. Not every child has every symptom. But chances are good that someone in our community has similar experiences to you/your child and can help or just provide a listening ear. Again, welcome!  Let us know how we can help you!

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.