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.

1p36 DSA Membership List

Please take a couple minutes to register with 1p36 DSA's membership list.  You'll recieve email information directly from the organization such as newsletters, fundraising ideas, annual conference details and 1p36 DSA updates.

Anyone who fills out the 1p36 DSA Membership Survey in the month of May will be entered to win 1 of 3 Signing Time Sing & Sign DVDs. Winners will be randomly drawn in June from individuals who complete the membership survey between 5/1/2011-5/31/2011. (1p36 DSA Board members are not eligible. ) Click below and complete the form today!

1p36 Deletion Support & Awareness Registration Form

Spring Edition of 1p36 DSA's Blue Ribbon Tribune Available!

Click below to go to the 2011 Spring Newsletter!

http://www.1p36dsa.org/services.html

Don't Let Time Run Out on the Early Bird Discount for the 2011 1p36 DSA Conference!

Group Photo from 2009 Conference

The 2011 1p36 Deletion Support & Awareness Conference is shaping up to be the best ever!  Don't forget to register early so that you can take advantage of the lower registration rate 

before May 15th. 

Did you know that this year's conference will be the 5th annual conference in the US for families affected by 1p36 Deletion Syndrome!  The first ever conference was the idea of an amazing mom of a child with 1p36 Deletion Syndrome in Florida in 2007!  Families came from all over (even Italy!) to meet each other and listen to speakers.  It was an incredible weekend of learning and sharing.  Parents were often heard saying, "Wow!  This is like a family reunion with people you've never met!"  There was a lot of laughter and tears, camera flashes and smiles.

Ever since then, there has been an annual conference in the US bringing together 1p36 families.  Some are veterans who have never missed a conference and some are new to the group or even the 1p36 Deletion diagnosis.  Many of the parents have been 'friends' on line for months or years and are thrilled to finally meet each other in person.  To be surrounded by so many others that understand exactly what it means to raise a child with 1p36 Deletion Syndrome is a powerful experience. 


 

Melanie and Angela at Mom's Night Out



  

 

Dr Lisa Shaffer presenting
at the 2010 Conference.



We hope you can join us for this wonderful opportunity to learn and connect.  Register Here!

Click here for the 2011 Preliminary Agenda

Click Here for Frequently Asked Questions about this year's conference



Callie and Mollie after some
water fountain fun.



Attendees at one of the information sessions.





Hope to see you there!

2011 1p36 DSA Conference Registration is OPEN!

On behalf of the 1p36 DSA, we would like to welcome you to the 2011 1p36 DSA Family Conference and Retreat held in Minneapolis-St. Paul. For the past four years, we've welcomed new and old families with members who have 1p36 Chromosome Deletion to gather in learning new information, share our stories and spend time together. This year, we invite you to get away with us as we meet on the beautiful campus of Bethel University in Saint Paul, Minnesota on the shores of Lake Valentine. Located just 20 minutes from both downtown St. Paul and Minneapolis, 25 minutes from MSP International Airport and 30 minutes from the Mall of America, we'll enjoy the comforts of the city and the quiet retreat of Bethel's 245-acre campus. You might notice things look a little different this year. First, we're pleased to offer an "all-inclusive" style retreat complete with lodging, meals, registration fees and activities. You'll find a blend of dynamic speakers with topics ranging from advocacy to education, ideas for adaptations and encouragement to face the daily challenges along with times to relax and enjoy being with our "1p36 Family". Be sure to explore the links to find detailed information on registration, conference details and more about the area. We look forward to "retreating" with you in the Land of 10,000 Lakes!


Sincerely,
Beth Hegney and Heather Antoine
2011 1p36 DSA Conference and Retreat Co-Hosts


For more information and to register please visit www.1p36dsa.org/2011conf .

We Need Your Photos!

1p36 Deletion Support & Awareness (1p36 DSA) is working on new video and promotional materials.  We need your photos!  If you have a high quality digital photo of your child with 1p36 Deletion Syndrome that you would allow 1p36 DSA to use for promotional and/or educational purposes, please email it to c.daggett@1p36dsa.org.  

Photos may be used for brochures, flyers, newsletters and other print material as well as on the 1p36dsa.org website or the 1p36 DSA blog.

Types of photos we are looking for:

All ages of 1p36 individuals

Close Ups

Candid Shots

Family photos

Baby photos

Active shots

Photos of 1p36 individuals receiving medical treatment either in hospital or clinic.

1p36 DSA conference photos

Small Print:

By submitting your photo(s), you agree to allow 1p36 DSA to use the photo(s) in digital and print materials for the purpose of promoting 1p36 DSA and to increase awareness or provide education of 1p36 Deletion Syndrome. Permission should be obtained by all subjects in the photo.   All submitted photos may either be used, not used or may be be used at a later date at the discretion of 1p36 DSA.   If you wish to place restrictions on how the photo you have submitted is used such as a time limit or a preference for print or digital media, please specify your wishes in your email when submitting the photo.

Please email c.daggett@1p36dsa.org if you have any questions.

Thank you for supporting 1p36 Deletion Support & Awareness!