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. 

Help us raise funds for the 2013 conference

The 2013 1p36 DSA conference is fast approaching. We are currently working very hard at securing speakers and finalizing the agenda for the conference coming up in San Antonio from August 1-4, 2013. Every year our conference has been growing and we had almost 50 families attend the conference last year in Gatlinburg, TN. As the conference grows, our need to raise money for the conference grows as well and this is where you can help.

The registration fees cover only a small portion of the costs to put on the conference. The board of 1p36 DSA needs your help to raise the money we need to put on a great conference this year. There are many ways to raise money. Some of you may want to just donate money or you can also ask friends and family to help with support. Yet another way is to approach the owner of the place where you work and ask for a donation to 1p36 DSA and make sure they know it is to help fund the 1p36 DSA conference. If you need more information on how to donate, just go to our donation page. Asking for money is also a way to tell people about our organization and spread awareness about 1p36 Deletion Syndrome. Another great way to raise money is to approach your favorite resaurant and ask them to donate a percentage of a days proceeds to 1p36 DSA.

The most fun way to raise money is to find something you like to do or something you are passionate about or are good at and figure out how to make it a fund raiser. If you like to bowl, put on a bowl-a-thon. If you like to wak or run you could put on a jog-a-thon. We have had families put together scrap book fundraisers and dodgeball tournaments. The only limitation is your imagination.

So get out there and raise some money for our cause. If you have any questions please contact me at k.shirtcliff@1p36dsa.org.  You can also go here to find out more information about fundraising and to download our fundraising guide. If you are planning a fund raiser, please let us know so that we can help you in any way that we can as well as help promote your fundraiser on our Facebook page and website.

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.

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.