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

1p36 Deletion Syndrome Research Opportunities

1p36 Deletion Support & Awareness recognizes the need for continued research into the many facets of 1p36 Deletion Syndrome. There is so much that researchers and the medical community do not understand about the syndrome. Because of this, 1p36 DSA encourages research into 1p36 Deletion Syndrome. At this time our organizational resources do not allow us to fully fund research initiatives but we do have contact with researchers around the country and we try to make them aware of the most pressing concerns that our 1p36 community has.

Below is a list of research projects that 1p36 DSA is aware of and supportive of. We do not specifically endorse any specific research project but encourage families to look over the research opportunities to see if it is something they would like to participate in. The more our 1p36 community is involved in and supportive of research, the more the medical community can learn about 1p36 Deletion syndrome. Please contact the researchers directly for more information.

• Dr. Daryl Scott, from Baylor College of Medicine, is conducting a research study to identify the genes that cause the medical problems associated with isolated 1p36 deletions.  Participants are asked to provide information about their child’s 1p36 deletion and health history.  For more information, please e-mail Dr. Scott at dscott@bcm.edu.

• Dr. Bernice Morrow, PhD is interested in identifying genes responsible for altering severity of medical problems in individuals affected with monosomy 1p36 syndrome.  She has an institutional internal review board (IRB) approved project to collect and analyze blood samples from affected children or adults and their parents. You will need to sign a consent form for research. This project is in collaboration with Drs. Lisa Shaffer and Daryl Scott.  If you are interested in participating in our study, please contact Bernice Morrow at bernice.morrow@einstein.yu.edu. 

  Bernice E. Morrow, Director of Translational Genetics, Professor of Genetics, Ob/Gyn and Pediatrics. Albert Einstein College of Medicine, 1301 Morris Park Ave, Bronx NY 10461, email:  bernice.morrow@einstein.yu.edu, phone: 718-678-1121, fax: 718-678-1016

Now Accepting Photos for the 1p36 DSA 2013 Calendar Fundraiser

1p36 DSA is again putting together a 2013 1p36 Deletion Syndrome Calendar. We did this last year and it was a great success. With the help of Christina Ferguson and Carrie Daggett we sold over 150 calendars. We are now accepting photos again this year. See info below:

• Please send ONE picture of your child or loved one with 1p36 Deletion Syndrome to Christina Ferguson's email at MeFergie@verizon.net. 
• Please make sure the picture is of good quality and resolution. 
• The picture will be cropped and or edited in order to fit into the calendar.
• Please include in the email your child's first name and last initial.
• All pictures must be received by November 1, 2012
• By sending a picture you are agreeing that your child's image may be printed in our calender fundraiser.

Prices and shipping dates have not been determined yet but the calenders will be around $20-$25 (it's a fund raiser) and will ship in time for Christmas.

The 1p36 family looses a fierce advocate

It is with a heavy heart today that I write that we have lost a member of our 1p36 family this week. Phoenix Guerra Schaefer passed away on August 9th, 2012 from injuries she received from a car accident. Phoenix was 27 and she leaves behind her two children, daughter Tru, who has 1p36 Deletion Syndrome and son Tre.

Phoenix was an important part of the birth of 1p36 Deletion Support & Awareness. She volunteered much of her time and energy to the organization at a time that was very critical to its success. After helping to found 1p36 DSA , she became a member of the board of trustees and served on the executive committee as vice president of public relations.

In addition to her work for the organization, she was also a support to other 1p36 parents. Phoenix did not hesitate to give out her contact information to anyone needing information, advice or a shoulder to cry on. She had a unique way of helping parents feel comfortable and no longer alone.

Phoenix was an amazing young woman who felt strongly about making a difference for 1p36 families. She was an advocate for her own daughter as well as all children with 1p36 Deletion Syndrome.

On behalf of 1p36 Deletion Support & Awareness, I extend our heartfelt sympathy to the Guerra and Schaefer families. Our thoughts and prayers are with you. The world has lost a fierce advocate for our 1p36 children.

Ken Shirtcliff
President, 1p36 DSA

Updated information for the 2012 conference

The 2012 1p36 DSA conference in Gatlinburg, TN is getting closer and closer and we wanted to let everyone know that new updated conference information is now posted on the  website. The most current agenda is there as well as a list of things to see and do while you are in Gatlinburg.

If you were not able to attend last years conference in St. Paul, you can still watch the videos of the different sessions online here. To watch the videos you will need to login to the website. If you are not going to be able to attend the 2012 conference this year we will be recording the sessions again this year. The sessions should be posted towards the end of the summer.

We can't wait to see everyone.