DSAIA Digest: October 2011

Sat, October 01, 2011 12:48 PM | Anonymous member (Administrator)

Cincinnati Celebrates 30 Years at their Annual Buddy Walk


On September 10th, the Down Syndrome Association of Greater Cincinnati celebrated individuals with Down syndrome at their annual Buddy Walk  while also celebrating thirty years as an organization.  According to Janet Gora, DSAGC Executive Director, several of the founders were present to lead the walk and also were featured in the "Founders' Tent" where families could visit with them about the early days of the organization and view an organizational timeline.  "Most of the founders are still involved with the organization," Gora said.  


This year's DSAGC walk brought approximately 10,500 people out.  Gora explained that along with the 30th AnniversaryCelebration, they also increased the number of fundraising teams recognized from ten to thirty this year.  On the Friday after the walk, eight Buddy Walk committee members (some self-advocates) visited their major sponsors personally to deliver a special piece of artwork, Buddy Walk shirts, candy and other gifts.  "We hand-delivered the gifts to thank our sponsors and to plant the seeds for their continued support next year," said Gora.  


DSAIA invites you to share your walk stories (and lessons learned) with us so that we may collect these experiences to share with others.  


Down Syndrome Consortium Holds Inaugural Meeting 


DC Consortium pic

Pictured here:  Deanna Tharpe (DSAIA), Michael Harpold (DSRTF), Jon Colman (NDSS), David Tolleson (NDSC), Michelle Livingston (GDSF), Bob Schoen (Research DS)

The National Institute of Health has joined with organizations interested in Down syndrome to form a consortium that will foster the exchange of information on biomedical and biobehavioral research on the chromosonal condition.  The inaugural meeting of this group was held on the NIH campus on September 29 with members of the NIH Down Syndrome Working Group and representatives from prominent Down syndrome and pediatric organizations.   


"The idea is to have an open channel of communication

between the NIH and those organizations intimately involved with Down syndrome," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development, the agency that will chair the new consortium.  "The consortium will allow NIH to inform the Down syndrome community of advances in the field, ongoing studies, and potential avenues for future research.  In turn, those who work in Down syndrome research and patient care can share their experiences and ideas for potential research opportunities with NIH."


A focus of the consortium will be the implementation of the NIH Down syndrome research plan.  The consortium will meet two to three times a year.

Is Your Group Ready to Celebrate?  


Down Syndrome Awareness Month is here!  As your organization begins to celebrate, are you still searching for new, exciting (additional and easy) ways to promote awareness of Down syndrome in your community?  DSAIA invites you to watch the DS Awareness Day/Month Ideas webinar which is located in the DSAIA Repository.  The webinar (recorded last year) features Janet Gora of DSA of Greater Cincinnati and Mark Leach of Down Syndrome Louisville and explores 21 low-cost and 21 no-cost ideas for promoting awareness locally.


In addition to the webinar, DSAIA members will also find a number of items in the Repository under Awareness Materials.  Visit the Events/Fundraising section to find both templates and ready-to-print materials.   Be sure and send us your stories about your own awareness activities so that we can share your success (and great ideas) with others! 


New Study on Down Syndrome Shows Positive Attitudes 


Three studies have just been published in the American Journal of Medical Genetics regarding attitudes of family members and individuals with Down syndrome.  Brian Skotko, Sue Levine and Rick Goldstein reported feedback from 2,044 parents/guardians, 822 brothers/sisters, and 284 people with Down syndrome around the country reported that Down syndrome is far more positive than many healthcare professionals describe.  Followng is a short list of results: 

  • 99% of parent/guardians said they loved their child with Down syndrome
  • 94% of brothers/sisters expressed feeling of pride about their sibling
  • 99% of people with Down syndrome said they were happy with their lives   

As you know, international discussion is mounting over the forthcoming noninvasive prenatal tests for Down syndrome.  The Down syndrome community has been dedicated to providing accurate, up-to-date information about Down syndrome for expectant parents.  Now, we have the largest and most comprehensive information to share about Down syndrome.  Read more about how your organization can utilize this information.  You can read the complete results of the study here.

DSAIA 2012 Registration To Open Soon 

Make your plans now to attend the 2012 DSAIA Annual Leadership Conference which will be held in Washington, D.C. February 29-March 3.  The event is planned in conjunction with NDSS' Buddy Walk on Washington.  Event attendees who register for the DSAIA conference will automatically be registered for the NDSS activities as well!  This partnership will allow Down syndrome leaders to participate in both the Day on the Hill advocacy event and important leadership training. 


Visit the Conference section of the DSAIA website to learn more about registration options, sponsorship opportunities and speakers.  Registration officially opens October 15th with discounts for DSAIA members and early registration.    

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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