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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


Reflections on the 2017 1p36 Conference

Below is a letter from a mom that attended the 2017 1p36 Deletion Support & Awareness Annual Conference. This mom also received a scholarship from 1p36 Deletion Support & Awareness to attend the conference.

The 2017 Conference in Baltimore, Maryland was the first time in thirteen months I had left my son. As excited as I was, I was more nervous. I'm not a very outgoing person so it's difficult to just walk up and strike up a conversation. Even so I made a few more friends than I expected. I Probably could have made even more, but there's always next year!

My experience was emotional, scary, and eye opening. The first hour I think I cried six times. From sadness and happiness. Sadness because of the babies and children we lost. Happiness because of the overwhelming feeling of being with people who actually get it. They know how you feel. They have been there or are currently there. They understand the pain, stress, sleepless nights, the constant worry etc. It made me feel relieved. We all have family and friends who sympathize or say they understand. But we all know that's not always the case. You only understand if your living it.

I learned many things for when my son is older to help with behavior and communication. How to engage him in different activities. How to help and support him when his dad and I aren't around.

The Q&A session with the genetics doctors was interesting to me. I learned quite a few things. Somethings I knew already. But it's reassuring hearing that it's not your fault. It's just something that happens. I know I have blamed myself. I didn't do something right. I know now for sure that's not the case.

Seeing all the kids with 1p36 Deletion Syndrome was great and hard at the same time. It really is such a wide spectrum. I often wonder where my son will fall. But it gave me confidence that he isn't as severe as I thought and there is so much potential and hope for him. Therapy, therapy, therapy!!!

When I arrived home I was slightly sad. Not that my feelings had changed for my son. But I see him in a different light now. I see the diagnosis more now than I did before. That hurts a little, but it helps me to have more patience and understanding with him.

The conference was an amazing experience and I look forward to being in Houston in 2018. I encourage all 1p36 parents, grandparents all family and friends to attend a conference if they are able. It is amazing the information and new friends you can make. It's a big family. A support system that all of us need. This is a long road and a rough ride. But together we can help our kids overcome and be the best they can be. They are blessings and should be treated as such.




2017 1p36 DSA Conference is just around the Corner

It's hard to believe that the 2017 Conference is less than two months away. If you haven't registered yet or made your hotel reservations you can find all the information you need by going to the 2017 Conference Page.

Last year 1p36 DSA was able to raise over $1500 on a raffle for a beautiful handmade 1p36 quilt made by Dianna Storck. Once again at our 11th Annual 1p36 Conference we will be raffling another beautiful handmade quilt featuring Captain Chromosome! It was also made by Dianna Storck, who is the aunt of Wendy Winiecki who has 1p36 Deletion Syndrome. This quilt has Captain Chromosome appliqued in the center, surrounded by the 1p36 logo colors. The quilt pattern is called "Deletable Mountains". It measures 64" x 64". The backing is a soft fleecy fabric called milky in royal blue (which is Wendy approved). We will be selling raffle tickets online through July 30th, 2017 and we will be selling them at the conference through August 5th. To buy raffle tickets for the quilt just go to the 1p36 DSA merchandise store. Raffle tickets are $5 for 1 or 5 for $20. Get yours now and know that even if you don't win you are helping a great cause.

The raffle winner will be drawn Saturday August 5 at the 2017 1p36 DSA conference in Baltimore, MD. You do not need to be present to win. If the winner is not at the conference they will be notified shortly after via phone call and/or email and the quilt will be shipped to you at no charge after arrangements are made.

  • This is a fundraiser with all proceeds to benefit 1p36 Deletion Support & Awareness
  • you will not receive a raffle ticket in the mail. Keep your receipt as proof of purchase
  • This is for a drawing for a chance to win the 1p36 quilt
  • please like and share with your friends and on Facebook

Come to the Conference, See an Oriole's game

No summertime visit to Baltimore is complete without catching a baseball game at the fantastic Oriole Park at Camden Yards!  Lucky for us, the Orioles are in town the weekend of our conference!

Your conference registration includes a ticket to the 7:05pm Friday August 4 game vs. the Detroit Tigers.  The stadium is only several blocks from the Lord Baltimore Hotel.  Register now!

Please note the following about Oriole Park:

--all items coming into the stadium will be inspected.

--no bags bigger than 16”x16”x8” are allowed.  Purses, diaper bags, and backpacks are allowed but must fit into a 16”x16”x8” box.

--no alcoholic beverages, glass containers, or coolers are allowed in the park.  You CAN bring in non-alcoholic beverages in plastic bottles.

--you will need to pass through a metal detector to get into the park.  You will need to remove your keys and cell phone from your pockets.

--children 2 and under do not need a ticket but will be expected to sit on your lap.

--Stollers must fold up and go under your seat in order to be kept in a seating area.  Large strollers can be checked at Stroller Parking inside of Gate G on the lower concourse.

--Family restrooms are located next to the First Aid rooms behind home plate on both the Upper and Lower Levels.

For the baseball fan: 

--Players and coaches may sign autographs from the time the gates open until 45 minutes before the start of the game.

--visit a Fan Assistance Center for a free certificate commemorating your first trip to Camden Yards.

Interested in being social but maybe not watching the game?  Oriole Park has a number of gathering areas.  These will be noted in your conference materials:

--Eutaw Street pedestrian mall
--the Flag Court
--the bullpen picnic area
--the Roof Deck
--Kids Corner at Gate A
--Kids Corner Play Area at Gate C
--Orioles Legends Park beyond the bullpens in center field

Find more information at  And don’t forget to register for the conference!


Conference Registration, Hotel Reservation and Scholarship Application all now open

Registration for the 2017 Conference is now open. All current information can be found at the conference info page. We have some special things in store this year and it is very important that you register as early as you can so that we can plan accordingly. We promise that the conference will be a special time to learn important information and make new friendships that can last a lifetime.

1p36 Deletion Support & Awareness is also very happy to be able to again offer 6 scholarships to the 2017 Conference. Each scholarship includes 3 nights hotel at the Lord Baltimore Hotel and free conference registration for 2 adults and the individual with 1p36 Deletion syndrome. Complete scholarship information and application instructions are available at Scholarship applications are due by April 16th.

Hotel reservation info has been available for a few weeks now but for those who are looking to reserve their hotel room just click here for more information.


Hotel Reservation info now available for the 2017 1p36 DSA conference

For everyone that is planning on joining us for the 11th annual 1p36 Deletion Support and Awareness Conference in Baltimore Maryland 3-5 August 2017—room reservations are now open! (Note: reserving a hotel room does not register you for the conference. Online registration for the conference is separate and can be found at ).  The conference is being held at the Lord Baltimore Hotel in downtown Baltimore.  You may reserve a room for the conference group rate of $125 double occupancy (not including tax) per night. Kids stay free. The group rate is available from July 31 to August 8.  Please call 855-539-1928 and mention that you are with the 1p36 DSA conference or you can easily book online at  Discounted Self-Parking is $15.00 inclusive of taxes for each 24-hour period (note: single in/out).

Each room includes:

  • Complimentary Wi-Fi throughout hotel, guest rooms and all public space

  • Complimentary use of Health Club/Fitness Center

  • Complimentary Bottled Water in every guest room

  • Complimentary safe in every guest room

  • Complimentary use of microwaves (located on every other landing)

  • Complimentary use of Business Center