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.

Update on Sunday, May 19, 2013 at 2:02AM by Ken

The Scholarship application has now closed. Winners will be Announced soon.

Registration for the 1p36 Annual Conference is now open

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.

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!