December 2010

News from the Executive Committee

Friends Reorganize to Enhance Effectiveness-Clarity

At its December 17 meeting, the Friends executive committeee finalized reorganization ideas to increase the effectiveness and clarity of the Friends’ role to support the mission and vitality of NCBDDD. These actions include:
1. Established the Friends of NCBDDD Advocacy Coalition, to be chaired in 2011 by Clarke Ross. We have previously asked Friends interested in analyzing and advocating NCBDDD appropriations to volunteer to serve on our coalition. Questions and offers to volunteer should be sent to clarkeross10@comcast.net. We are also looking for an advocacy coalition vice chair. Send your questions and offers to serve as vice chair to Clarke.

2. Elected Roberta Carlin as 2011 Friends of NCBDDD chair. If you have questions about the educational mission of the Friends or ideas for enhancing the effectiveness of the Friends, send them to rcarlin@aahd.us

3. Decided to focus 2011 Friends meetings on the NCBDDD webinars. These are tentatively scheduled for Wednesdays. All Friends conference calls will be called on a “as needed” basis. We will announce the schedule and topics of the webinars early next year.

4. Agreed to a webinar participant suggestion to post the World Health Organization (WHO) definitions of “disability” and “health” on the Friends website. NCBDDD uses the WHO definitions in its planning and implementation. These should enhance consistency of definition among Friends members.

5. Elected Emil Wigode of the March of Dimes to complete the term of office of departing EC member Carolyn Mullen.

NCBDDD Webinar Series Archived Online

Over 180 participants listened in as the Friends of NCBDDD hosted a two part series in November and December with NCBDDD. Part one in the series featured Dr. Coleen Boyle.  Dr. Boyle serves as Acting Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. Dr. Boyle joined NCBDDD’s Division of Birth Defects and Developmental Disabilities in 1988, first as Section Chief and later as Branch Chief and Division Director.  In part two of the series, NCBDDD’s three divisions joined us. Dr. Gloria Krahn, Director of the Division of Human Development and Disability, Dr. Coleen Boyle, Acting Director of NCBDDD representing the Division of Birth Defects and Developmental Disabilities, and Dr. Hani Atrash, Director of the Division of Blood Disorders all discuss their strategic priorities and goals.  Both recordings are now available online for viewing.

News from our Partners

AMCHP Peer to Peer Exchange

The AMCHP Peer-to-Peer Exchange program allows states to learn from one other about building systems of care for children and youth with autism spectrum disorders (ASD), share lessons learned and best practices, and develop action steps  To date, AMCHP has convened two Peer-to-Peer Exchanges, with Missouri and Alaska serving as state leads. State leads guide an initial planning call, on-site meeting and follow-up technical assistance call for exchange states. State leads are selected based on their willingness to lead exchange states on a particular issue, and to confer their experience and expertise through sharing advice and lessons learned, and to facilitate dialogue between states  Exchange states are chosen based on their level of interest or need for additional technical assistance in a particular area (e.g. transition to adulthood, screening). AMCHP has received consistent, positive feedback from past Peer-to-Peer Exchanges, and recently held a technical assistance call highlighting states’ experience in past exchanges.
Past exchanges include:

•        The Missouri Peer-to-Peer Exchange focused on transition to adulthood for children and youth with ASD

•        The Alaska Peer-to-Peer Exchange focused on EPSDT

•        The upcoming Utah Peer-to-Peer Exchange will focus on medical home

If you would like additional information about the AMCHP Peer-to-Peer Exchange program, please click on the link above to contact Melody Gilbert. You can also find information and resources on the State Public Health Autism Resource Center (SPHARC) website.

Tourette Syndrome Professional Education

The program partnership joining the national Tourette Syndrome Association (TSA) with the CDC and the NCBDDD specifically, has begun its seventh year. TSA offers authoritative professional education programs on Tourette Syndrome (and related conditions) at no-cost to audiences of physicians, nurses, educators, clinicians and allied professionals. Over 450 “live” programs have been scheduled in every state in the country.  We welcome invitations from your department or facility. Please visit the link above for more information or call 718-224-2999, Ext. 235.

New Clinical Leader to take Marcus Autism Center into the Future

Marcus Autism Center has appointed Ami Klin, Ph.D., as its first Chief of Autism and Related Disorders.  An internationally recognized psychologist and researcher, Dr. Klin comes from the Child Study Center at Yale University School of Medicine, where he directed the Yale Autism Program. In his most noted work, Dr. Klin used eye-tracking technology to visualize and measure social engagement, allowing him to monitor infants who potentially have an autism spectrum disorder (ASD).  Dr. Klin’s appointment concludes a nationwide search for a clinical leader who will continue to improve efforts in diagnosis, treatment, research and advocacy for children with autism and related disorders.  As the rate of children with these conditions continues to rise, Dr. Klin’s new role is crucial to Marcus Autism Center. ASDs are the fastest growing developmental disabilities in the United States, affecting one in 110 children nationally. In Georgia, that number is even higher. It is estimated that more than 20,000 Georgia children—or roughly one in 98—have an ASD.  A native of Brazil, Dr. Klin lived in Israel for many years, receiving his bachelor’s degree from Hebrew University. He earned his doctorate in cognitive psychology at the University of London. He has been honored for his medical contributions by the Autism Society of America Foundation, the Asperger’s Association of New England and the Connecticut Autism Spectrum Resource Center, among others.

Immunization Video Vignettes from NAPNAP

The National Association of Pediatric Nurse Practitioners (NAPNAP) offers a complementary web-based educational video vignette that addresses questions about immunization and is designed for use by both parents and healthcare providers. “Immunization Conversations,” features NAPNAP members and pediatric nurse practitioners engaging in thought-provoking discussions with parents to answer questions about immunizing their children. It consists of several 60-90 second video clips between parents and healthcare providers addressing a variety of topics including an overview on vaccines, combination vaccines, immunization schedules, parent/child anxiety, and common misconceptions about immunizations.

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