October 2011

News from NCBDDD

10 Years of Service Closing Reception

On Tuesday, November 1, 2011 from 6-8pm, the National Center on Birth Defects and Developmental Disabilities (NBCDDD) is hosting the 10 Years of Service Reception in conjunction with the APHA annual meeting.  The Reception will be held at the Renaissance Hotel, which is across the street from the Washington Convention Center. All Friends of NCBDDD members are invited to attend and welcome to bring colleagues. The reception will include 1) dramatic storytelling 2) inspiring artwork 3) meaningful discussions of the important work of NCBDDD in the next 10 years 4) and refreshments. As part of the reception, NCBDDD has hired a videographer to interview attendees about their positive experiences with NCBDDD over the years. There will be a “green room” and the interviews will be memorialized as part of NCBDDD’s history. All Friends of NCBDDD members will have the opportunity to be interviewed as part of this exciting event at the Renaissance Hotel. Please send an email to Roberta Carlin if you are interested in being interviewed at  rcarlin@aahd.us.

Promoting Health and Preventing Disease for People with Disabilities: CDC’s Public Health Approach to Disability
October 25, 2011, 4:00-5:00pm Eastern

Register Now

The first installment of a free, 4-part webinar series co-sponsored by the American Association on Intellectual and Developmental Disabilities (AAIDD) and the American Association on Health and Disability (AAHD).  This first webinar will provide an overview of CDC’s public health approach to disability.  Beginning with  a brief history of disability and public health, presenters will discuss different models of disability, and the application of public health surveillance, research, and policy to disability.  DHDD’s approach is one of including persons with disabilities in mainstream programs where possible, and use of cross-disability and condition-specific approaches where necessary. Attendees will be engaged in a dialog on best practices in inclusion of disability issues in public health and needs for training in health and public health professions.

Gloria Krahn, PhD, MPH, Director of the Division of Human Development and Disability at the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention

Vince Campbell, PhD, Chief Disability and Health Officer and the liaison from the National Center on Birth Defects and Developmental Disabilities’ Division of Human Development and Disability to the Office of the Associate Director of Program, Centers for Disease Control and Prevention

Sickle Cell Disease Field Event

On September 30, NCBDDD and the Sickle Cell Disease Association of America (SCDAA) hosted a program, “Closing the Survival Gap: The Role of Public Health in Sickle Cell Disease,” in Memphis, Tennessee. The event was part of NCBDDD’s 10 Years of Service activities highlighting key program priorities and was held in conjunction with the SCDAA annual conference. The program focused on the important role public health can play in preventing sickle cell disease and recent advances in sickle cell research. Trevor Thompson, Tennessee Sickle Cell Disease Foundation, served as the moderator and speakers included Memphis Mayor A.C. Wharton, Jr., Willie Henry from Representative Steve Cohen’s office, Dr. Althea Grant from NCBDDD, and SCDAA President Sonja Banks.

Birth Defects Prevention Hearing

On October 19, Colleen Boyle, NCBDDD Director, participated in a bicameral Congressional staff briefing on birth defects prevention work at CDC, organized and sponsored by Rep. Rosa DeLauro (D-CT) and Sen. Kay Hagan (D-NC).  Also participating on the panel were Christina Chambers with the California Teratogen Information Services and Beth Jones, a nurse at Cornerstone Healthcare in High Point, NC.  Dr. Boyle provided an overview of CDC’s birth defects prevention activities, and Dr. Chambers and Ms. Jones discussed the work of Pregnancy Risk Information Services (PRIS) a network of 13 organizations providing evidence-based information to patients and health care professionals about exposures during pregnancy and lactation and how the PRIS organizations collaborate with and complement the work of CDC.  There were approximately 30 staffers in attendance; questions from staff focused primarily on how CDC surveillance, research, and prevention activities inform PRIS.

HHS Secretary Adopts New Recommendation on Newborn Screening

On September 22, 2011, HHS Secretary Kathleen Sebelius adopted the recommendation of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) that Critical Congenital Heart Disease (CCHD) be included on the Recommended Uniform Screening Panel (RUSP). RUSP is the national recommendation informing states of the congenital conditions that should be included in each state newborn screening program.


News from our Partners
Tell Your Story! Highlighting Local Health Department Success Stories about Preventing and Addressing Birth Defects, Disabilities, and Blood Disorders: A NACCHO – CDC Video Media Project

In partnership with the National Center on Birth Defects and Developmental Disabilities, the National Association of County and City Health Officials (NACCHO) selected Cleveland County Health Department (Norman, OK), Coconino County Public Health Services District (Flagstaff, AZ), Public Health – Dayton & Montgomery County (Dayton, OH), and Schenectady County Public Health Services (Schenectady, NY) to create video media projects highlighting their agencies’ successes in preventing birth defects and developmental disabilities.  Tell Your Story! Highlighting Local Health Department Success Stories about Preventing and Addressing Birth Defects, Disabilities, and Blood Disorders: A NACCHO – CDC Video Media Project was conducted as a part of NCBDDD’s 10 Years of Service activities and aimed to demonstrate how CDC’s research and science helps to advance positive health outcomes at the local level.  The topics covered by the selected local health departments (LHDs) include: providing in-home visits for child development after premature birth; early identification of children with autism; living well with a disability, and folic acid distribution and education. NCBDDD will feature footage from the LHD videos at its 10 Years of Service closing event on November 1, 2011 in Washington DC.

Teams Chosen to Participate in the Prevention of Substance-Exposed Pregnancies Practice Collaborative

Aiming to reduce the number of pregnancies affected by alcohol and substance use within U.S. urban areas, CityMatCH, with funding and guidance from the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD), announces the first meeting of a new Practice Collaborative focusing on the Prevention of Substance-Exposed Pregnancies (PSEP). This project builds on the current work of CityMatCH member health departments and the proven expertise of CityMatCH and NCBDDD.

In the CityMatCH PSEP Practice Collaborative model, CityMatCH convenes, organizes, and oversees activities designed to educate, engage, and support the local work of collaborating teams from select communities. The purpose of the PSEP Collaborative is to increase awareness and knowledge among providers who serve women of reproductive age of the risks of alcohol and substance use during pregnancy, and the associated adverse effects; to enhance the capacity of health care providers and public health professionals in delivering screening and intervention services to women of reproductive age who engage in substance use; and to refer women to treatment, as appropriate.

The PSEP Collaborative teams will combine their knowledge of evidence-based practices with local knowledge, capacity, and problem solving to move beyond what has typically been done to prevent alcohol and substance use during pregnancy. The following teams were selected to participate in the PSEP Practice Collaborative: Sonoma County (CA); Multnomah County (Portland, OR); Denver, CO; Montgomery County (Dayton, OH); Pinellas County (Tampa, FL); and Baltimore, MD. The first meeting of the PSEP Collaborative is being held in October 2011 and the cohort of teams is expected to work together through the fall of 2012. For more information, contact Molly Schlife, Project Coordinator, at (402) 561-7500 or mschlife@unmc.org and visit www.citymatch.org.


36th Annual TASH Conference Updates

The 36th Annual TASH Conference will run November 30 – December 3, 2011, at the Hilton Atlanta in Atlanta, Ga. The 2011 TASH Conference will feature more than 200 hours of concurrent presentations on topics including inclusive education, employment, community living, human rights and diversity and cultural competency issues. To boot, we’ve confirmed four keynote speakers (Kate Gainer, Rob Horner, John O’Brien and Norman Kunc) that have profoundly impacted education, service and advocacy for persons with significant disabilities. To learn more about the conference, visit www.tash.org/2011TASH  or contact TASH at (202) 540-9014.

Fragile X Clinical & Research Consortium (FXCRC) Receives New $2.2 Million Grant Through NCBDDD

The Centers for Disease Control through its National Center on Birth Defects and Developmental Disabilities, has decided to continue its support of the work of the Fragile X Clinical & Research Consortium (FXCRC) with a new, 2.2 million, four-year grant following a just-completed three-year grant.  The FXCRC, an organization initiated by the National Fragile X Foundation in 2006, is now comprised of 25 U.S. clinics and a growing number of international affiliates. Families visiting the U.S. clinics are given the opportunity to be part of the project and, as a result, to contribute to the growing understanding of the impact of the syndrome which, in turn, is leading to a growing understanding of when and how to best intervene.

The grant will be used to develop a comprehensive approach to large-scale collection and analysis of structured, longitudinal data for patients with fragile X syndrome and will bring better care to the more than 100,000 Americans affected by the condition. Fragile X syndrome is the most common known cause of inherited intellectual or developmental disability, as well as the most common known single-gene cause of autism.  You can learn more on the National Fragile X Foundation’s Announcements page or on its Clinics page.


Senate Resolution 215 Recognizes Cytomegalovirus

As the first legislative step in the long road ahead for congenital Cytomegalovirus (CMV) awareness, Stop CMV achieved a great milestone. The first congressional recognition of CMV was accomplished when the United States Senate unanimously passed Senate Resolution 215. Championed by Senators Lisa Murkowski (R-AK) and Barbara Milkulski (D-MD), the resolution primarily designated the month of June 2011 as National Cytomegalovirus Awareness Month and advanced a formal recommendation that “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children.” Full Text Version of Senate Resolution 215.

The mission of Stop CMV and The CMV Action Network is to prevent and eliminate congenital CMV and to improve the lives of all people affected by congenital CMV. Since 2003, Stop CMV has been fostering congenital CMV awareness via internet and public awareness campaigns. The CMV Action Network is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus.  Stop CMV has grown to become the world’s largest CMV organization, dedicated to preventing and eliminating congenital CMV and improving the lives of all people affected by congenital CMV. Stop CMV has launched the first national congenital CMV grassroots advocacy program, helping parents, families, and supporters actively engage in efforts to raise awareness about congenital CMV.  For more information about Stop CMV please visit www.stopcmv.org.


BlazeSports America

BlazeSports America, one of 10 national organizations funded by the U.S. Department of Health and Human Services (HHS) as part of the HHS Communities Putting Prevention to Work (CPPW) initiative, hosted the 11th Annual BlazeSports International Conference on Paralympic Sport and Physical Activity September 15-18 in Decatur, Georgia.  Attendees who traveled in from across the country and the globe were treated to sessions from renowned experts and cutting-edge professionals, including NCBDDD’s Dr. Michael Fox, Associate Director of Science in the Division of Human Development and Disability.  Training ranged from hands on physical activity and coaching sessions to policy discussions to a primer on social media.  Over 30 attendees pursued accreditation as a Certified Disability Sport Specialist (CDSS) through specialized sessions offered through the BlazeSports Institute for Applied Science.  The CDSS Program is designed to benefit people at all different levels of engagement in physical activity and disability sport.  Through their participation in the CDSS program, volunteers, coaches, public health practitioners and other professionals can demonstrate to employers and organizations that they are leaders in disability sport and physical activity.  If you are interested in learning more about the CDSS program or the 2012 Annual Conference you can contact Dan Humphreys at 404-270-2000.

Amputee Coalition and Össur Partner to Improve Emotional Well-Being for People With Limb-Loss

Prosthetics innovator Össur, the Amputee Coalition, and Johns Hopkins University are working together to create a new, nationwide program to help prosthetists address the emotional needs of people with limb loss. This program will launch later this year and is an example of the type of innovative partnerships that are needed to better address the healthcare needs of amputees.  Concept testing to ensure the program’s feasibility and relevance took place earlier this year during the Annual Scientific Meeting of the American Academy of Orthotists and Prosthetists (AAOP). Amputees and prosthetists who participated in focus groups at AAOP agreed that mental health issues are a growing and often unrecognized need within the amputee community; both groups also expressed strong support for the new initiative. Clinicians from Johns Hopkins University, Department of Physical Medicine and Rehabilitation, have begun developing the tools and training materials to be trialed in 2012.  View Press Release.

Partner Conferences

Association of University Centers on Disabilities
November 6-9, 2011
Crystal City, VA

CHADD 23rd Annual International Conference on ADHD
November 10-12, 2011
Orlando, Florida

Alliance for Full Participation
November 17-19
Washington, DC

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