December 2013

In this Issue

Greetings from
the Friends of

Parent Corner

News from NCBDDD

New Project Findings:
Autism Spectrum Disorder
Among Somali and
Non-Somali Children
in Minneapolis

Free CEs Available on the
Diagnosis and Treatment
of Blood Clots and
Clotting Disorders

50th Anniversary of the
Surgeon General’s Report
on Smoking and Health

Webinar Series on Bleeding
and Clotting Disorders

New Women and Bleeding
Disorders Video Available

January 5-11 is National
Folic Acid Awareness
Week and January is
National Birth Defects
Prevention Month

Partner Feedback
on Autism Webinar

New Study on Hand
Washing and
CMV Infection

NCBDDD’s Birth Defects
COUNT Update: Optimal
Blood Folate Concentration

CDC Finds Cluster of
Newborns in Tennessee
with Bleeding Disorder

News from our Partners

ASTHO Publishes Resources
about Barriers to Wellness
for People with Disabilities

Annual Conference

TSA Announces 2014
Biennial National Conference


Friends of NCBDDD:
Orientation Webinar

January 10, 1 pm ET

GPCI Webinar: Genetic
Counseling in
Primary Care

January 15, 1 pm ET

CDC Public Health
Grand Rounds:
Science Impact

January 21, 1 pm ET


2014 AFB
Leadership Conference

February 27-March 1
New York City, NY

Annual Conference

March 11-14
Boston, MA

TSA National

March 20-23

Arlington, VA

American Academy
of Audiology Annual

March 26-39

National Down Syndrome
Congress Convention

July 11-13
Indianapolis, IN
*Registration opens March 3!


OAR Graduate Research Grant
Deadline: February 14

Cerebral Palsy International
Research Foundation
Research Grant

Deadline: March 1

Calling for News from
NCBDDD Partners

Send in updates on conferences,
meetings, special awards
and journal or research
announcements for the next
edition of the Friends of
NCBDDD E-Newsletter! Submit
program highlights with a short
summary of 150-200 words to
Tory Christensen by 1/8.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen,
Chair (
Craig Mason,
Vice Chair
Jeff Cohen,
Judit Ungar,
Member at Large
Cindy Brownstein,
Member at Large
Carolyn Mullen,
Member at Large
Alan Brownstein,
Member at Large
Mary Andrus,
Member at Large
Emil Wigode,
Advocacy Coalition Liaison
Annie Acosta,
Advocacy Coalition
Randy Fenninger,
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

NCBDDD’s Social
Media Corner

Leadership on Twitter:

Dr. Coleen Boyle,
NCBDDD Director:

Dr. Althea Grant,
in the Division of
Blood Disorders:

Dr. Scott Grosse,
Research Economist
in the Division of
Blood Disorders:

Dr. Georgina Peacock,
Developmental Pediatrician in
the Division of Birth Defects
and Developmental Disabilities:

Susanna Visser,
in the Division on Human
Development and Disability:

Greetings from the Friends of NCBDDD Chair

Adriane Griffen, ChairDear Friends,

Happy Holidays! Thank you for a terrific year as the Chair of the Friends. We gathered your feedback in a communications survey and highlighted social media in a webinar and with a tweet-a-thon. We shared resources and strategies on how to assist people with disabilities in the new health insurance market places. Thank you for your time, talent and contributions to the Friends.

We also held an election and will be welcoming a new slate of Executive Committee (EC) members in January. This year we will be opening up our orientation webinar for new EC members to any interested member. The orientation webinar will be held on January 10 at 1pm ET. I invite you to log on to learn about the roles that EC members play. This will help you get a preview of what EC service looks like and ways that you can be more involved as a general member. Throughout the year, the EC will be calling on the membership to support more dynamic communication efforts, including ways to better integrate with each other and NCBDDD leadership.

Let us hear from you throughout the new year! Share your news and updates by tweeting and using the hash tag: #FriendsNCBDDD, post on the Friends listserv ( or send us a newsletter article. I look forward to a productive 2014 in which all members are actively engaged with NCBDDD and each other.

Best and Happy Holidays,

Adriane Signature

Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

Parent Corner

Missing our Friends and Allies

Julie and Katie BeckettThe Parent and Family world is going to be short two strong advocates:

Diana Denboba, long time project officer with the Maternal and Child Health Bureau, Division of Children with Special Needs, has retired. For many years, she served as the voice of families, especially those who were underserved and from culturally diverse backgrounds. Working closely with the National Center on Cultural Competence at Georgetown University and Family Voices, she moved the system to become more family centered and community-based. We salute her bravery in bringing these issues to the forefront and will truly missed her beautiful smile! However, we know she will keep a watchful eye on the future and remind us if we go astray. Thank you Diana.

On another, sadder note, families lost one of their own: Barbara Popper from Needham, MA. She started working with the Federation for Children with Special Needs in Boston and was an instrumental staff to Family Voices. Barbara fought a long-time battle with lung cancer, and she will long be remembered. Her work will continue in the hearts of the families she mentored and she will be greatly missed!

Julie Beckett

News from NCBDDD

New Project Findings: Autism Spectrum Disorder Among Somali and Non-Somali Children in Minneapolis

NCBDDD, in partnership with the National Institutes of Health and Autism Speaks, supported the University of Minnesota (UMN) through a cooperative agreement with the Association of University Centers on Disabilities, to conduct the largest project to date looking at the number and characteristics of Somali children with autism spectrum disorder (ASD) in any US community. NCBDDD also provided technical support to help the UMN implement CDC’s rigorous method for tracking autism, modeled after the Autism and Developmental Disabilities Monitoring Network. Below, is a summary of the key findings.
Based on children who were 7-9 years old and living in Minneapolis in 2010:

  • About 1 in 32 Somali children in Minneapolis was identified as having autism spectrum disorder. This estimate of the number of Somali children with autism spectrum disorder is about the same as White children but higher than Black and Hispanic children in Minneapolis.
  • Somali children with autism spectrum disorder were more likely to have intellectual disability than children with autism spectrum disorder in all other racial and ethnic groups in Minneapolis.
  • The average age of first autism spectrum disorder diagnosis among Somali children was the same as White, Black, and Hispanic children—about 5 years old. This means that many children in Minneapolis are not being diagnosed as early as they could be.

These new data can be used to understand how ASD affects children differently, and where improvements can be made so that all children in Minneapolis are identified and connected to services and supports as soon as possible. Click here to learn more about this project.

Free CEs Available on the Diagnosis and Treatment of Blood Clots and Clotting Disorders

NBCA logoThe National Blood Clot Alliance (NBCA) is offering free continuing education hours through an online curriculum for nurses, nurse practitioners, physician assistants and pharmacists to help increase knowledge about the diagnosis and treatment of blood clots and blood clotting disorders. The course, “Stop The Clot: What Every Healthcare Professional Should Know,” provides ease of use for busy healthcare professionals who want to enrich their knowledge about deep vein thrombosis and pulmonary embolism at their own pace and at times convenient to their schedules. To learn more about the curriculum, click here.

This curriculum is a product of the cooperative agreement with NBCA and the Division of Blood Disorders at NCBDDD/CDC. For more information, contact Barbara Kornblau at

50th Anniversary of the Surgeon General’s Report on Smoking and Health

Cover of 50th Anniversary of Surgeon Generals Report on Smoking and HealthJanuary 2014 marks the 50th anniversary of the first, “Surgeon General’s Report on Smoking and Health.” As we approach the anniversary of this groundbreaking report, the Office of the Surgeon General will be working to increase awareness of the lessons learned and the progress that has taken place during the last 50 years of tobacco control efforts. An important part of this effort is engaging existing tobacco control, public health, and wellness partners, and establishing partnerships with organizations new to our cause.

To that end, the Office of the Surgeon General, in partnership with CDC’s Office on Smoking and Health, has developed a website with you in mind. The site contains downloadable materials such as, buttons and banners for your own Web sites, PowerPoint slides, press inserts, promotional tweets, fact sheets, and other resources to make your outreach efforts easy.  More materials will be added to the site as they become available. Please visit to view the resources and to sign up to receive email updates. Visit INFO2014SGR50@CDC.GOV for general questions or sharing for promoting this historic anniversary.

Webinar Series on Bleeding and Clotting Disorders

Alok Khorana HeadshotNCBDDD’s Division of Blood Disorders is proud to launch its new webinar series on Bleeding and Clotting Disorders. This new series will provide evidence-based information on new research, interventions, emerging issues of interest in blood disorders, as well as innovative approaches in collaborations and partnerships. The first webinar, “Venous Thromboembolism and Cancer,” will take place on February 6 from 2 to 3 pm ET. The presenter will be Alok A. Khorana, MD, Sondra and Stephen Hardis Chair in Oncology Research, Director of the Gastrointestinal Malignancies Program, Taussig Cancer Institute of the Cleveland Clinic. For more information about the webinar, please contact Cynthia Sayers at

New Women and Bleeding Disorders Video Available

Three women sitting on a couch talkingDid you know that as many as 1% of women in the United States may have a bleeding disorder and are unaware? In efforts to raise awareness about the signs and symptoms of von Willebrand Disease (VWD), a common bleeding disorder among women, NCBDDD developed a video, “Women and Bleeding Disorders: Living with von Willebrand Disease.” In the video, three women talk about their experiences living with VWD, and speak of the importance of recognizing the signs and symptoms and seeking help from a healthcare provider if one has questions or concerns about abnormal bleeding. Please view the video, share the video and link to or embed the video into your website. For more information, please visit

January 5-11 is National Folic Acid Awareness Week and January is National Birth Defects Prevention Month

NCBDDD has planned a number of activities to increase awareness that birth defects are “common, costly and critical” and to promote birth defects prevention messages in January. Look for spotlight articles on each week in January, messages on CDC’s Facebook page, an announcement in MMWR and new materials that can be shared with colleagues, families, and friends. Follow @DrBoyleCDC on Twitter throughout the month for special birth defects messages with the hashtag #1in33 (a reference to the prevalence of birth defects). NCBDDD encourages all partners to retweet these messages or tweet your own messages using the hashtag #1in33 in support of the awareness month. Looking for additional resources to plan activities? The National Birth Defects Prevention Network (NBDPN) has recently posted its 2014 National Birth Defects Prevention Month Resource Packet.

Partner Feedback on Autism Webinar

This past summer, NCBDDD held a webinar for partners to discuss questions and information gaps on autism spectrum disorder (ASD) that can be addressed through public health tracking. Dr. Deborah Christensen, a principal investigator for NCBDDD’s Autism and Developmental Disabilities Monitoring (ADDM) Network, presented an overview of ADDM and the most recent findings on autism spectrum disorder. Partners were able to provide their input on questions such as, “What additional tracking data would be useful?” and “What do you think are the most important questions that should be addressed through tracking during the next 5-10 years?” Partner feedback included the importance of assessing the impact of the updated DSM-5 definition and insurance status on the prevalence of ASD. Thank you to all the partners who joined in the discussion. If you have any questions, feedback on the webinar, or have suggestions for future webinar topics, contact Julia Richardson.

New Study on Hand Washing and CMV Infection

Scientists from NCBDDD, in collaboration with scientists from the CDC’s National Center on Immunization and Respiratory Diseases, recently published a paper in Applied and Environmental Microbiology which shows that a wide range of hand cleansing methods are effective at eliminating cytomegalovirus (CMV). These methods include cleansing with water, regular and antibacterial soap and alcohol-based hand sanitizer. Findings from this study suggest that simple behavioral modifications may reduce a woman’s risk of CMV infection. CMV is the leading cause of birth defects associated with infection. CDC works to understand how to best prevent CMV infection in women of childbearing age, especially women who are pregnant, and how to effectively communicate prevention messages. Click here to view the abstract.  

NCBDDD’s Birth Defects COUNT Update: Optimal Blood Folate Concentration

Neural Tube Defects Prevention LogoNCBDDD has been supporting World Health Organization (WHO) efforts to develop a guideline for optimal blood folate concentration in women of reproductive age as a biomarker to monitor neural tube defect prevention efforts. Following the process for WHO Guideline Development, in September 2013, WHO held a meeting of the Guideline Development Group in Geneva to present evidence to support, develop and vote upon the proposed WHO guideline. The meeting was comprised of Guideline Members (voting members) and External Resources (provided technical and subject matter expertise). NCBDDD staff served as external resources at the meeting and presented preliminary findings from studies they conducted to inform the development of the guidelines. The studies looked at the association between blood folate concentrations and risk of neural tube defects. If approved, a guideline on optimal blood folate concentrations would enhance NCBDDD’s Birth Defects COUNT initiative to prevent neural tube defects globally by helping countries around the world identify at-risk populations and determine appropriate strategies that can help increase blood folate concentrations (i.e., folic acid fortification, supplementation) as well as enhance the ability to monitor and evaluate the effectiveness of these prevention programs. For more information, contact Amy Cordero.

CDC Finds Cluster of Newborns in Tennessee with Bleeding Disorder

The CDC has identified a cluster of newborns in Tennessee with late vitamin K deficiency bleeding (VKDB). VKDB is a serious, but preventable bleeding disorder that can cause bleeding in the brain. In each case, the newborn’s parents declined vitamin K injection at birth, mainly because they were unaware of the health benefits of vitamin K at birth. Preliminary findings of CDC’s investigation, in collaboration with the Tennessee Department of Health, were published in the Morbidity and Mortality Weekly Report. CDC continues to work with Tennessee Department of Health to determine if other cases of late VKDB occurred in the state in recent years. Also, a case-control study is under way to assess whether any additional risk factors might contribute to the development of late VKDB in children who do not receive vitamin K at birth. Click here for more information on the investigation.

Please take action by distributing this information widely to your network, incorporate the need for vitamin k at birth into your educational materials, and consider retweeting or sharing CDC’s twitter and Facebook messages on vitamin k with your partners. Stay tuned for additional information on this ongoing study.

News from our Partners

ASTHO Publishes Resources about Barriers to Wellness for People with Disabilities

ASTHO LogoThe Association of State and Territorial Health Officials (ASTHO) has published two new resources focusing on health and wellness for people with disabilities. The issue brief focuses on promoting wellness and healthy lifestyles for people with disabilities, and it offers examples of state strategies to increase the quality of life of people with disabilities. The fact sheet highlights the barriers that women with disabilities face when accessing preventive healthcare services and focuses on public health strategies that state health agencies can implement to address those barriers.

2014 NAPNAP Annual Conference

NAPNAP Conference LogoNAPNAP is hosting its 2014 Annual Conference, “Strength in Children’s Health, March 11-14 at the Hynes Convention Center in Boston, MA. NAPNAP’s conference features a robust schedule of educational sessions addressing diverse practice settings and an exhibit hall with leading healthcare and consumer products companies. The early bird registration rate expires on January 31! Click here to register. For more information, call 877-369-0994.

TSA Announces 2014 Biennial National Conference

TSA Conference LogoThe National Tourette Syndrome Association (TSA) is proud to announce that its 2014 Biennial National Conference will be held March 20-23 at the Crystal Gateway Marriott in Arlington, VA. The TSA National Conference is the only time when people with TS can come together in a warm, family-like atmosphere to learn from the nation’s preeminent clinicians, researchers, educators and other professionals in the field. Attendees gain support, build friendships and share experiences with their peers. The National Conference is the largest gathering of its kind and is attended by families and individuals with Tourette Syndrome, educators, professionals, leaders and volunteers who come from across the nation and around the world. Click here for more information.

The Friends of NCBDDD is a coalition of government and private sector participants who work together to enhance the mission and activities of the National Center on Birth Defects and Developmental Disabilities (NCBDDD)in promoting child development; preventing birth defects and developmental disorders/disabilities; and enhancing the quality of life and preventing secondary conditions among people who are living with mental or physical disabilities, or a combination thereof. For any questions regarding this edition or previous editions please contact Tory Christensen

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