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!

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

Got Hope? We Do!

Winter sometimes brings extra trials to 1p36 Families.  Many children and adults with 1p36 Deletion Syndrome are very susceptible to complications from colds and flu.  Make sure that you are cold and flu smart.  These sites have some tips on how to help prevent the flu and how to recognize and treat it:

CDC's Flu Guide for Parents: http://www.cdc.gov/flu/pdf/freeresources/updated/a_flu_guide_for_parents.pdf

How to recogonize and treat the Flu:http://www.seattlechildrens.org/safety-wellness/about-the-flu/flu-symptoms-treatment-chronic-conditions/

Interactive tool for on flu symptoms:  http://www.choa.org/ecall/

As always, we are sending our support to those 1p36 families that are struggling right now. 

We've got hope!

What We Are Thankful For...

Its that time of year when we are reminded to count our blessings.  All of us at 1p36 Deletion Support and Awareness know that our biggest blessing is you.  Without your support, 1p36 DSA does not exist.

 

Having your child diagnosed with 1p36 Deletion Syndrome can be devastating and families are often left feeling lost and alone. But, with your help, 1p36 DSA provides those families with a way to get information and to connect to an entire community of families who can provide strength and hope.  Your donation of either money or volunteer time means these families know they are not alone.

You have shown through your support that our work matters.  There is still a lot more to be done and a lot more families to reach out to.  We feel confident that, with your help, 1p36 DSA will continue grow and we will accomplish our goal to reach ALL individuals and families affected by 1p36 Deletion Syndrome.

So, from 1p36 Deletion Support & Awareness, a heartfelt Thank You to all of you!

We hope you have a wonderful Thanksgiving.

Jewelry Designer Supports 1p36 DSA

Proudly display love for the person in your life with 1p36 Deletion Syndrome and help 1p36 DSA  while doing it!

Lightweight, 1/2 inch, Aluminum 1p36 Bracelet

Copper Creek Designs has generously made 1p36 Deletion Support & Awareness the focus of their July Fundraiser!  This is exciting for two reasons, 1. they are donating a part of the proceeds from every special 1p36 bracelet and key chain they sell to 1p36 DSA and 2. the bracelets and key chains are beautiful!

To get your bracelet or key chain click here to go to Copper Creek Design's Etsy store to order.

1p36 Key chain

Jamie Allgier, Copper Creek Design's owner says:

"Each month, I choose a group and do a fundraiser! For the month of June, I have chosen The 1p36 Deletion Support & Awareness - this amazing group offers support, education and awareness for families with loved ones affected by this disorder.

Each bracelet is a 1/2 inch light weight aluminum cuff bracelet custom made when you order. Bracelets are stamped with the phrase "Love doesn't count chromosomes, 1p36 deletion syndrome". 

Each is lightly textured then stamped and shaped by hand."

Order soon because the fundraiser only lasts through the end of July!

1/2 Inch, Copper Cuff

Each bracelet and key chain are stamped with the words:
"Love Doesn't Count Chromosomes.  1p36 Deletion Syndrome"

Thank you Copper Creek Designs for your support!

Update on Wednesday, October 10, 2012 at 5:36PM by Ken

Thanks to the generous donation of Jamie Allgier of Copper Creek Design and the support of our 1p36 Deletion Syndrome community, over $1000 was raised during July is Support of 1p36 DSA.