Halloween Photos

 Share Halloween photos of your 1p36 child for the 1p36 DSA Fall Newsletter!
Send your favorite Halloween photo to c.daggett@1p36dsa.org and include your child’s name & age.
We can’t wait to see what great costumes our 1p36 kids are parading around in this October!

Halloween is around the corner and planning for a child with special needs to participate in all the fun can be challenging.  1p36 Deletion Syndrome parents are used to getting creative about a lot of things including costumes and trick-or-treating.  Here are some thoughts and ideas to help.

Costumes A little creativity and forethought can help with costume planning.  For my 9 year old daughter with 1p36 Deletion Syndrome, I have a lot to think about for a costume.  It needs to be one that she will be comfortable in and that will allow for diaper changes and g-tube access.  She won’t stand for a hat staying on longer than 30 seconds and she won’t keep her hands away from face make-up.  So these are things we avoid.  Because she is in a wheelchair, the costume has to be one that she can stay in while seated and that doesn’t interfere with the chair’s belts and straps. 

Other costume considerations for a special needs child might be

• avoid accessories that could be a choking hazard.
• consider visibility both for the child to see out easily and for others to see him or her on a dark street.
• try to make it easy to get on and off for you and your child.
• If your child has sensory issues, think of a costume that uses the child’s clothing.

Check out these websites for costume ideas:

• http://bit.ly/rq5TBr - Ideas for children with sensory issues. If you see an idea that interests you, click on ‘view this resource’.
• http://bit.ly/JuJ1  - Great wheelchair costume ideas and advice

Trick-or-Treating

We have never gone trick-or-treating in our neighborhood.  It’s too difficult to imagine getting my daughter’s wheelchair up the steps of every house on the block.  I would be exhausted by the end of the night.  Don’t get me wrong, if my daughter wanted to do it, I would ignore my aching back and muscle through!  Luckily there are other options for Halloween fun such as church functions, trunk-or-treat community events and merchants both downtown and at the local malls that entertain trick-or-treaters on Halloween night.  Do an internet search or look through the local paper to find events in your area. Some children (including mine) can easily be over-stimulated so plan ahead and bring things that can help your child feel comfortable.

Have fun and enjoy your Halloween.  We look forward to seeing your pictures!

Summer Newsletter

Did you get a chance to read the 1p36 DSA Summer Newsletter?

Click Here to read about the 2011 Annual Conference and other 1p36 DSA news.

1p36 DSA is Excited to Announce Our New Logo!

1p36 Deletion Support & Awareness is proud to unveil a brand new logo! Starting with the 2011 conference and into the coming months, you’ll find a dynamic new look for our blog, Website, Facebook page and publications. The purpose of the new logo is to create a 1p36 “brand” that will serve to give our organization a modern and unified identity. One that, we hope, will become as synonymous with 1p36 Deletion Syndrome, as the pink ribbon is with breast cancer awareness and the puzzle piece is with autism.

The logo features the first chromosome from 1p36 Deletion Syndrome in the shape of two people. They stand side by side, hands raised together in solidarity, just like our 1p36 family stands together supporting each other. They are similar but not exactly alike just as individuals with 1p36 Deletion Syndrome share many characteristics but are still unique. The missing bands on each arm represent the missing genetic material that has brought us all together.  The colors are vibrant and eye catching and stand out on the web, print and other forms of media. After careful consideration, the board of 1p36 Deletion Support & Awareness feels that this new logo will form a fresh “brand identity” which will serve to make 1p36 Deletion Support & Awareness stand out in the realm of nonprofit organizations. 

Ken Shirtcliff
President, 1p36 Deletion Support & Awareness

Dr. Hopkin of Cincinnati Childrens Hospital to speak at the 2011 Conference!

We are very excited that Dr. Robert Hopkin, Director of the Genetics Residency Programs at Cincinnati Children's will be the keynote speaker at the 1p36 DSA conference in July! 

From Dr Hopkin's Bio:

Robert J. Hopkin, M.D. is an assistant professor of clinical pediatrics at Cincinnati Children's Hospital Medical Center. Dr. Hopkin graduated from the University of Nevada Medical School. He completed residency and chief residency in Pediatrics at the Phoenix Children's Hospital, Maricopa Medical Center Combined Residency Program. His training in Medical Genetics was completed at Cincinnati Children's Hospital Medical Center.

The majority of Dr. Hopkin's time is spent in caring for patients with genetic disorders. He participates in clinics from Fetal Care to Adult Genetics. He is also actively involved in education of health care providers regarding the application of genetics for patient care. Dr Hopkin has participated in a number of clinical trials and is a member of American College of Medical Genetics Committee on Therapeutics. He has participated in natural history studies on Fabry disease, Pompe disease, velocardiofacial syndrome, Pierre Robin sequence, Neurofibromatosis type I, and several other genetic conditions. The unifying principle in his research interests is application of scientific knowledge to improve outcomes for patients afflicted with genetic disorders.

Cincinnati Children's Hospital has created a very helpful and information packed brochure on 1p36 Deletion Syndrome.  Click Here to check it out!

We hope to see you at the conference as well so don't forget that June 15th is the last day to register!

Go to the 2011 1p36 DSA Conference Site

Time is running out to register for the 2011 Conference

Its hard to believe that its only 6 weeks until the conference!  June 15th is the last day you will be able to register for the 2011 1p36 Deletion Support and Awareness Conference in Minneapolis/St. Paul!  This year's conference is shaping up to the best ever and we don't want you to miss it.  Check out the preliminary agenda to see whats in store http://www.1p36dsa.org/2011conf/agenda_temp.php.

We've changed the conference a bit this year to make it more affordable and to make it more of a retreat for our 1p36 families.  We will be staying and meeting on the beautiful Bethel University Campus, only 20 minutes from the downtowns of both St. Paul and Minneapolis.  A bonfire, nature walk and a family dance are all on the agenda!  To get more particular info about the accomodations and special considerations, please check out the Conference FAQ.

So get to registering and we can't wait to see you there!!! 

Click Here to Register for the 2011 1p36 DSA Conference!!!

If you have questions about the conference, please email us at info@1p36dsa.org.