March 2011

News from the Friends of NCBDDD

Healthy Beginnings Briefing Kicks off NCBDDD’s 10 Years of Service

The “Healthy Beginnings” briefing on birth defects was hosted by the March of Dimes, Spina Bifida Association, Congresswoman Lucille Roybal-Allard, and Congressman Mike Simpson on March 3rd as part of the planned activities for NCBDDD’s 10 Years of Service events taking place throughout the year.  Speakers at this event included: Judy Woodruff, Senior Correspondent and Co-Anchor of the PBS NewsHour and mother of a child with spina bifida; Dr. Coleen Boyle, Acting Director of the CDC’s National Center on Birth Defects and Developmental Disabilities; Dr. Martha Werler, an epidemiology professor at the Boston University School of Public Health, and Dr. Beth Benedict, a professor at Gallaudet University and President of the American Society of Deaf Children.  The panel was moderated by Dr. Jennifer L. Howse, President of the March of Dimes Foundation.  Several activities have been planned throughout the year to celebrate a decade of service on behalf of NCBDDD working to promote the health of babies, children and adults living with birth defects, disabilities or blood disorders. Please visit to learn about events and activities taking place near you.  To add the 10 Years of Service button to your website, visit the Multimedia & Tools section. 

News from the Friends of NCBDDD Advocacy Coalition

Friends Advocacy Leaders Meet with White House-OMB Staff

On March 8, Friends of NCBDDD representatives Roberta Carlin, Joe Canose, Clarke Ross, and Emil Wigode met with staff of the White House Office on Disability and the Office of Management and Budget (OMB) responsible for CDC accounts to discuss the President’s FY 2012 budget proposal for NCBDDD. The major topic of discussion was the Friends’ recommendation that all future White House level releases on disability budget issues include the role of NCBDDD. We also discussed proposals for change contained in the President’s budget. The meeting was very productive and a positive outcome from the meeting was recognition of Friends of NCBDDD by White House and OMB staff and the opportunity for ongoing dialogue.

New Advocacy Documents Online

Three new resources have been posted to the Friends Website:

1. Friends of NCBDDD Advocacy Coalition Statement

2. NCBDDD at CDC- Facts and Figures

3. Friends of NCBDDD Advocacy Coalition – Focus on Impacts

Please visit: to access these new materials.

News from our Partners

OAR Applied Autism Research Grant Program

The Organization for Autism Research (OAR) seeks applied research proposals for its 2011 Autism Applied Research Competition.  Through this competition, OAR intends to promote evidence based practices delivered from research in the following areas:

•The analysis, evaluation, or comparison of current models of assessment, intervention, or systems of service delivery including policy analysis,

•Applied aspects of educational, behavioral, or social/communicative intervention across the lifespan,

•Effective intervention across the lifespan for individuals considered to be severely impacted by their autism,

•Adult issues such as continuing education, employment, residential supports, sexuality instruction, quality-of-life determinants, and “later intervention,” and

•Issues related to family support, social and community integration, assessment and intervention with challenging behavior, and the use of technology in support of learners with ASD.

OAR seeks to fund studies of up to $30,000 that will offer to produce practical, clearly objective results that promise some direct benefit for individuals with autism spectrum disorders (ASD), their families, and related service providers (e.g., teachers, classroom aides, job coaches, speech pathologists, psychologists, etc.) at different times in their lives.  Proposals are due by April 1, 2011. 
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Amputee Coalition White Paper Warns of Increasing Limb Loss in the U.S.

On average, 507 people lose a limb every day in the United States. This number is expected to almost double by 2050 unless a major public awareness campaign is launched and key prevention initiatives put in place, according to a white paper released by the Amputee Coalition’s Limb Loss Task Force. The inaugural Limb Loss Task Force met in Washington, D.C. on April 16-18, 2010 to develop the white paper that will serve as the roadmap to limb loss prevention and improved care for amputees across the country.  “We are proud to present ‘Roadmap for Limb Loss Prevention and Amputee Care Improvement.’ Until now, no comprehensive, integrated plan existed on the national or state level that includes  limb loss prevention advancement and lifespan care improvement for people affected by limb loss,” said Kendra Calhoun, president and CEO of the Amputee Coalition. “By convening the Task Force and producing the white paper, our board of directors took the initiative to create a plan that will have a powerful impact on resolving these issues in the next decade.”  The Task Force is comprised of experts in limb loss – physicians, podiatrists, nurses, physical therapists, prosthetists, health behavior experts, and researchers from the private and public sectors, the military and the federal government. The Task Force developed a Four Point Action Plan that is outlined in the white paper. The Limb Loss Task Force was convened through funding for the National Limb Loss Information Center from the Centers for Disease Control partially supported by cooperative agreement from the National Center on Birth Defects and Developmental Disabilities. 
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Partner Conferences

2011 USOC Paralympic Leadership Conference

April 29-May 2, 2011
Colorado Springs, Colorado
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Health Frontier for Intellectual Disabilities

May 23-26, 2011
Bethesda, Maryland
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Amputee Coalition National Conference

June 2-4, 2011
Kansas City, Missouri
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