Order your 2013 1p36 DSA Calendar Now

We are ready to take orders for the 2013 1p36 DSA Calendar. They will be done at the printers on Friday and should start shipping on Monday the 10th. Get your orders in now as we only have a limited number of calendars and I want everyone to get them by Christmas. They are going to look great!!! Just go to http://www.1p36dsa.org/hydroflask/   We also have some Hydroflasks left as well.

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.

It's not that

We wanted to share something that a 1p36 Deletion Sydrome mom shared with us recently. Julie R. and her son where having a rough few days and so she wrote the following for some inspiration and reasurance. We all go through hard times with our children and I think it is especially in those times when we need the perspective that Julie gives us here. Thank you for allowing us to share it with others.

It's not that I'm still changing my 16 year olds diaper.
It's not that I'm still bathing, brushing his teeth, or getting him dressed.
It's not that I'm still preparing his breakfast, lunch, snacks, and dinners.
It's not that I'm still driving him to all of his specialists. (Cardiology, urology, psychiatry.....)

It's not that I'm still buying toys, movies, and books geared towards a 3 year old.
It's not that I give him more medications a day than I've taken in my entire life span.
It's not that he engages in SIB's (self injurious behaviors)
It's not that he can't verbally talk.
It's not that he's missing part of his first chromosome.

It IS that he put the laundry away today with out being asked!
It IS that he took a bath with out hitting himself!
It IS that he still loves the wiggles!
It IS that he knows his ABC's!
It IS that he loves when I sing to him! (LOL. Even when I can't stand the sound of my own voice)
It IS that he is a miracle that has already overcome what he was "never going to do" !
It IS that he can walk!
It IS that he can eat orally!
It IS that he is finally sleeping through most nights!
It IS that he has learned to talk using pictures!
It IS that he can say the word HAPPY!!!!
It IS that he's missing part of his first chromosome!

He is my miracle. He is my reason. He is my connection to an amazing group of people. He is my baby, and my teenager, and my love!

1p36 DSA looking for volunteers to host future conferences

1p36 Deletion Support & Awareness is now planning for the annual conferences in 2014, 2015, and 2016. The conference for 2013 will be in San Antonio, TX. The 1p36 DSA annual conference is put on by the organization but we do so with the help of a conference host along with a myriad of volunteers. If you have ever been interested in hosting a conference in or near a city you live in, we have put together a conference planning guide as well as a conference host application. Both documents can be found at www.1p36dsa.org/conferences/ toward the bottom on the page.

2013 Conference Preview

The Seventh annual 1p36 Deletion Support and Awareness conference will be held in the beautiful city of San Antonio, Texas on Thursday August 1^st through Sunday August 4^th, 2013. Our family convention is designed for parents, family members, and caregivers. We also encourage physicians, therapists and teachers who want to learn more about 1p36 Deletion Syndrome to attend.  Thursday evening will kick off the meet and greet. It’s a great time where parents, moms, dads, grandparents and siblings will have an informal opportunity to introduce themselves and share their joys, concerns, and strategies with others.  Our family conference is an excellent time to feel connected, share stories, learn lots of information, and simply enjoy each other’s company!

We are super excited to announce that the conference will take place at the Drury Plaza Hotel Riverwalk in San Antonio. For the conference attendees, rooms at the hotel will cost $129.00 plus tax per night and $19.00 for valet parking. You can find parking rates to be cheaper from independent parking structures within walking distance from the hotel. These room prices are also available for check in as early as Monday, July 29^th and as late as checkout Tuesday, August 6^th for those who would like to come early or stay a bit late to enjoy the beautiful city of San Antonio.

Formerly the Alamo Bank, this 24-story skyscraper was renovated to maintain its historical character while creating modern comfort. The Drury Plaza Riverwalk Hotel stands as Trip Advisor’s top 10 rated hotels in all of San Antonio. The hotel offers the perfect ambience while you indulge in biscuits and gravy, scrambled eggs and sausage at the free Hot Breakfast, mingle at the free 5:30 Kickback and snack on the free popcorn and soda.

The rest of the hotel doesn’t cut any corners. The guestrooms feature Flat Panel LCD TV's, comfortable beds and free wireless Internet throughout the hotel.  All rooms will have microwaves and refrigerators. The Drury hotel also offers a relaxing outdoor rooftop pool and indoor pool with multiple whirlpools. Sounds like a pool party in the making so don’t forget to pack your bathing suit!

San Antonio, home to the Alamo, the World Champion San Antonio Spurs and the River Walk, hosts a vibrant mix of culture, cuisine, architecture, moving history and patriotism. The city’s heritage and traditions are rich, as are its modern pleasures. San Antonio’s many attractions include Sea World, the Market Square, Morgan’s Wonderland, Six Flag’s Fiesta Texas, and a historical attraction you’ll always remember… The Alamo! For more information on San Antonio and the areas many other attractions, you can visit San Antonio’s visitors Bureau: www.visitsanantonio.com.

Please make sure to mark your calendar and join us for a memorable time! You can expect more information about booking a room, registration, and conference activities on the 1p36 DSA website: www.1p36dsa.org or the 1p36 DSA Facebook page. Looking forward to connecting with you in the beautiful Lone Star state of Texas!

Beau & Sherry Culvahouse
2013 conference hosts