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

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.

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.