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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

Friday
Jun282013

Conference Registration Closes June 30th

Two days left to register for the 7th Annual 1p36 Deletion Support and Awareness Conference!

This year's conference is being held in San Antonio Texas at the Drury Plaza Hotel - Riverwalk, August 1st - 3rd.

Click here for more information and to register:  

http://www.1p36dsa.org/2013-conference-info/

There are lots of great speakers and actvities planned.  You can see the preliminary agenda here.

If you have any questions, please email them to info@1p36dsa.org.

We hope to see you there!

Monday
May272013

1p36 Families Planning Meetings Around the World

We've told you about our conference this August in San Antonio, Texas but we like you to know about some other 1p36 groups in other parts of the world planning meetings!

2012 1p36 Family - UK & Ireland gathering

In the very near future, 1p36 families in the Netherlands will be getting together.  The Dutch organization for 1p36 Deletion Syndrome has organized a family meeting on Saturday, June 1, 2013, in Giethoorn. For more information, see their website: http://www.1p36.nl/.


The 1p36 Family - UK & Ireland group is holding a family conference in Belfast Ireland this year, August 15th through the 18th at The Lamon Hotel and Country Club - www.lamon.co.uk. The total cost of the hotel is £319 based on two adults & two children for the three nights and includes 2 meals plus milk and cookies for the children.  To make reservations, call +44 2890448631 and speak with Julie McKeever.  If you would like more information please contact the meeting organizer, Sarah, at sarahcoates1@hotmail.co.uk.
Meeting other families affected by 1p36 Deletion Syndrome can be amazingly beneficial not only for sharing information but also to connect with others who are traveling a very similar road as yourself.  If you are able, we heartily encourage you to attend.
If you have a gathering you are organizing in your part of the world, even if its just a few families meeting up,  please let us know so we can spread the word.  Don't forget to share your pictures and stories of the event with us as well!
To stay up to date with 1p36 happenings, be sure to LIKE our Facebook page! https://www.facebook.com/1p36DSA

 

Saturday
Apr202013

2013 Conference Scholarship Information Now Available

 

The 2013 Conference Scholarship Information is now available by clicking here. If you are someone who has never attended a 1p36 Deletion Support & Awareness Conference and need financial assistance, we really encourage you to apply. Just read the story below to see how last years conference affected one mom who won a scholarship.

Attending the 2012 1p36 deletion syndrome conference was an experience of a lifetime! Not only did I gain information, but most importantly I released pain, guilt, frustration, and fear. It was like I entered into a world where I slowly emptied all of these struggles, and replaced them with a sense of comfort, understanding, and family. What an amazing experience.

As we were driving down the main drag in Pigeon Forge to get to Gatlinburg, side by side other cars I kept looking around with butterflies thinking maybe there is someone from my support group in that van, or maybe that one, or that one, and so on. We finally pulled into the hotel and immediately I recognized someone, a Mom and her little boy from the group…a flood of heat immediately rushed throughout my body. Then as we park I see another family and another. I am flooded with emotion. We check in and get into the elevator to go up to our room and in the elevator I break. Not knowing why I just start bawling. And, as I type this memory I am finding myself unable to hold back emotion again, crying this very moment remembering what I was feeling. Just knowing I was surrounded by other people who knew just how much I had been through, what I was currently going through, and how much I was going to go through. They understood the sacrifices, the pain, the tired, the emotion, and the sense of feeling so alone. My son made socializing a little tuff showing off his screaming and tantrum phase, but I still managed to gain so much. Just being in the presence of other families and actually feeling like they were part of my family when I had never met any of them until then.

Some might find this crazy to say but my favorite and most gained part of the conference besides just being there, was the question and answer. Parents pleading for answers and guidance and the loving responses were just so overwhelming. I think I cried the whole time. It felt so good and it released so much pent up emotion to witness others going through similar struggles.

Seeing other children faced with 1p36 deletion was great for me also. I wish I would have been able to meet and interact with them more. Seeing older children/young adults was a great insight to a future for my son. Attending the conference was life changing for me. I now know firsthand that I am not alone on this 1p36 journey.

Thursday
Mar142013

Registration for the 1p36 Annual Conference is now open

 

Saturday
Feb162013

1p36 moms are accomplished authors

We have always known that the moms of kids with 1p36 Deletion syndrome are special people. It turns out that a couple of them are talented authors as well. Both Laurel Mills and Keva Horry have had books recently published.

Laurel Mills is an accomplished writer and poet and her most recent book "Rumor of Hope" won the winner of the 2012 Encircle Publications Chapbook Contest. This book of poems gives us insight into Laurel's struggles and challenges of raising Beth who has 1p36 Deletion Syndrome.  If you would like to find out more about Laurel or would like to purchase her book please visit her website at laurelmills.net.

While Laurel Mills has been published several times, Keva Horry has just had her first book published. Her book "Glamorous Sacrifice: Life...in the Shadow of Championships " is now available on amazon.com. Keva's book is a memoir chronicling her tumultuous journey as the wife of a championship-winning professional athlete, and the mother of a child with 1p36 Deletion Syndrome. Keva and Robert Horry's daughter Ashlyn passed away in 2011.

Keva and Robert started the Ashlyn Horry Foundation as a way of honoring Ashlyn’s seventeen years on earth, and the precious legacy she left permanently embedded in the hearts and minds of many.