Friday, September 30, 2011
Wednesday, July 13, 2011
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
President, 1p36 Deletion Support & Awareness
Monday, June 13, 2011
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
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
Wednesday, June 8, 2011
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.
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.
Sunday, May 15, 2011
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!
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!
Wednesday, May 11, 2011
Wednesday, April 20, 2011
Don't Let Time Run Out on the Early Bird Discount for the 2011 1p36 DSA Conference!
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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.
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| Melanie and Angela at Mom's Night Out |
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| Dr Lisa Shaffer presenting at the 2010 Conference. |
We hope you can join us for this wonderful opportunity to learn and connect. Register Here!
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| Callie and Mollie after some water fountain fun. |
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| Attendees at one of the information sessions. |
Hope to see you there!
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