January 2013

In this Issue

Greetings from the Chair

News from NCBDDD
New Study on Health Risk
Behaviors Among Young
Adults with Spina Bifida

Public Health Grand
Rounds on January 15

Effective Strategies for
Promoting Preconception
Health — From Research
to Practice

Folic Acid Awareness Week

National Birth Defects
Prevention Network
Educational and
Promotional Materials

NCBDDD has Three New
Profiles on Sharecare,
the Popular Consumer Website
Associated with Dr. Oz.
Check it Out!

News from our Partners
NBDPN’s Parent Advisory
Group Commemorate
National Birth Defects
Prevention Month

Resources Available
from the National
Blood Clot Alliance

ACHA Webinar — Life with
a Single Ventricle:
ACHD Patients Living
with a Fontan

Friends of NCBDDD Executive Committee

Adriane Griffen, Chair
Craig Mason, Vice Chair
Jeff Cohen, Membership/Communications
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
Melissa Putman, Advocacy Coalition Co-Chair
Roberta Carlin, Past Chair

& Events

AMCHP Annual Conference
February 9-12, 2013
Washington, DC

CEDR National Conference
March 11-12, 2013
Crystal City, VA

Health Disparities Research
at the Intersection of Race,
Ethnicity, and Disability: A
National Conference

April 25-26, 2013
Washington, DC
*Abstract Deadline: 1/14

Training Program on
Surveillance and Prevention
of Birth Defects and
Preterm Births

May 27-31
Geneva, Switzerland
*Application Deadline: 1/31

July 10-12
Dallas, TX
*Abstract Deadline: 12/19

Upcoming Webinars
& Webcasts

Public Health Grand Rounds
Killer Clots — Preventing
Venous Thromboembolism

January 15, 1 pm EST
Watch via Webcast: www.cdc.gov/about/

 ACHA Webinar
Life with a Single
Ventricle: ACHD Patients
Living with a Fontan
January 15, 7 pm EST

Click here to register

Effective Strategies for
Promoting Preconception
Health — From
Research to Practice
January 30, 1 pm EST

Click here to register


OAR Graduate Research
Grant Program

*Deadline: 2/15

Assistance FOA

*Deadline: 3/7

OAR Applied Research

*Deadline: 4/5

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
by February 1, 2013. Photos and web links are encouraged!

NCBDDD’s Social
Media Corner

Please join us!
January Social Media Events


Upcoming Twitter Chats!
Topic: Birth Defects
Awareness Month: What pediatricians need to know to
talk with their patients.
Date: Wednesday, January 23
Time: 2:00 pm EST
Host: American Academy of Pediatrics
How to Join: Follow the #1in33 hashtag on Twitter

What you can do:
• Forward this information to your colleagues and networks and ask them to participate!
• Promote the chats with your own tweets or by retweeting @DrBoyleCDC.
• Be part of the chat on Wednesday, January 23 and talk about what you and your organization are doing to prevent birth defects.

National Birth Defects Prevention Month Tweet-Up
During the entire month of January, NCBDDD will be sharing a fact a day on Twitter to raise awareness of birth defects. Each daily fact will be marked by the hashtag: #1in33. We encourage you to participate by following and re-tweeting the facts! Feel free to add content that is more specific to your priorities or customize them to incorporate your state data – just remember to use hashtag #1in33. Please share with your colleagues and other groups who might be interested in participating.


Leadership on Twitter:

Dr. Coleen Boyle, NCBDDD Director: https://twitter.com/DrBoyleCDC

Dr. Althea Grant, Acting Director
of the Division of
Blood Disorders: https://twitter.com/DrGrantCDC

Dr. Scott Grosse, Research Economist in the Division of
Blood Disorders: https://twitter.com/DrGrosseCDC

Dr. Georgina Peacock, Developmental Pediatrician in
the Division of Birth Defects
and Developmental Disabilities: https://twitter.com/DrPeacockCDC

Susanna Visser, Epidemiologist
in the Division on Human
Development and Disability: https://twitter.com/VisserCDC



Join the Friends of
NCBDDD Listserv

Greetings from the Chair

Adriane Griffen, ChairHappy New Year! I am excited to be serving as the Chair of the Friends of NCBDDD and look forward to a productive 2013 in which all members are engaged with NCBDDD and the other members of the Friends.

I encourage you to remain active throughout the year and make the most of your membership in the Friends! Please visit the Friends website at www.friendsofncbddd.org to read archived newsletters, view Friends webinars, and learn about upcoming activities. Each month Friends have the opportunity to place an update/announcement in the “News from Partners” column in the Friends newsletter. Share your news about upcoming meetings, journal publications, research updates, or awards, and learn more about your Friends colleagues and their work. As a Friend, you may also post on the Friends listserv at any time by sending an email to friendsofncbddd@lyrisvs.aucd.org.

I want to extend a warm thanks to all the members who voted in the Friends election this fall and to all the Friends who ran for office. We are happy to put forth a slate of Executive Committee members who represent the broad membership of the Friends. The current members of the Executive Committee are:

• Chair, Adriane Griffen, Association of University Centers on Disabilities, agriffen@aucd.org (Term 2013-2014)
• Vice Chair, Craig Mason, National Birth Defects Prevention Network, craig.mason@maine.edu (Term 2013-2014)
• Membership/Communications Chair, Jeff Cohen, Fragile X, j.cohen@fragilex.org (Term 2013-2014)
• Member at Large, Judit Ungar, National Tourette Syndrome Association, Judit.ungar@tsa-usa.org (Term 2010-2013)
• Member at Large, Cindy Brownstein, Spina Bifida Association, cbrownstein@sbaa.org (Term 2013-2014)
• Member at Large, Carolyn Mullen, Association of Maternal and Child Health Programs, cmullen@amchp.org (Term 2013-2014)
• Member at Large, Alan Brownstein, National Blood Clot Alliance, abrownstein@stoptheclot.org (Term 2010-2013)
• Member at Large, Mary Andrus, Easter Seals, mandrus@easterseals.com (Term 2013-2014)
• Friends Advocacy Coalition Liaison , Emil Wigode, March of Dimes, ewigode@marchofdimes.com (Term 2011-2014)
• Friends Advocacy Coalition Co-Chair, Annie Acosta, The Arc, acosta@thearc.org (Term 2013-2014)
• Friends Advocacy Coalition Co-Chair, Melissa Putman, March of Dimes, mputman@marchofdimes.com (Term 2013-2014)
• Past Chair, Roberta Carlin, American Association on Health and Disability, rcarlin@aahd.org (Term 2013-2014)

Please reach out to any of the Executive Committee members on any issue, or if you would like to become more involved in the Friends’ activities. The Executive Committee meets monthly via conference call. For more information on the Friends Executive Committee, including minutes from the monthly conference calls, please visit the website at www.friendsofncbddd.org.

Throughout the year, the Executive Committee will be calling on the membership to support more dynamic communications efforts, including social media planning on ways to better integrate with NCBDDD leadership. Please check out next month’s newsletter and the website for more details.

Again, I look forward to serving as your Chair and working together in 2013! Thank you for all you do each and every day to not only support your own organization’s mission, but also the mission of NCBDDD. Together we can enhance the activities of 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.

Best regards,

Adriane Signature

Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

News from NCBDDD

New Study on Health Risk Behaviors Among Young Adults with Spina Bifida

Scientists from CDC’s Division of Human Development and Disability at NCBDDD recently published a paper in Developmental Medicine & Child Neurology which suggests that young adults with spina bifida exhibit unhealthy behaviors that continue as they age into their late 20s. These behaviors may include eating less healthy diets, smoking cigarettes, drinking alcohol, and using illegal drugs. About half of the study participants with spina bifida experienced mild or major depressive symptoms. Nearly 90% of those responding to this study had a doctor visit in the past year, suggesting the need to increase awareness and offer mental health screenings and professional counseling to those affected by spina bifida. CDC works to improve the health of people with spina bifida through the following projects: the National Spina Bifida Patient Registry; research into spina bifida and end stage renal disease; and the South Carolina Study for Adolescents and Young Adults with Rare Conditions.
Link: http://www.cdc.gov/ncbddd/features/spinabifida-keyfindings-Arkansas.html

Public Health Grand Rounds on January 15

The topic of CDC’s Public Health Grand Rounds will be, “Killer Clots – Preventing Venous Thromboembolism.” It will take place on Tuesday, January 15 at 1:00 pm ET, at CDC’s Roybal Campus, Building 19, Auditorium A, Atlanta, GA. If you cannot join in person, please join by live webcast at: www.cdc.gov/about/grand-rounds or follow the twitter hashtag: #cdcgrandrounds. Presenters will include:

• Althea M. Grant, PhD, CDR, U.S. Public Health Service, Chief, Epidemiology and Surveillance Branch, Division of Blood Disorders, NCBDDD, CDC, “Public Health Importance of Venous Thromboembolism”
• Michael B. Streiff, MD, FACP, Associate Professor of Medicine, Medical Director, Johns Hopkins Anticoagulation Management Service
Johns Hopkins Medical Institutions, “Prevention of Venous Thromboembolism (VTE): The Johns Hopkins VTE Collaborative”
• P. Jeffrey Brady, MD, MPH, CPT, U.S. Public Health Service, Associate Director, Center for Quality Improvement and Patient Safety Agency for Healthcare Research and Quality, “Patient Safety and Prevention of Hospital-Associated Venous Thromboembolism”

Please participate in this important event and make sure to promote this to your colleagues and communities. Share this invitation or provide the direct website link: http://www.cdc.gov/about/grand-rounds/archives/2013/January2013.htm. You can also participate and promote VTE in advance of the event on Twitter – just make sure to use the hashtag: #cdcgrandrounds.

Free Continuing Education Opportunity
Receive free training and continuing education opportunities/contact hours for watching broadcasts of Public Health Grand Rounds (PHGR). The course code for PHGR is PHGR10. Thirty days from the initial session, the course number will change to WD1640 and will be available for continuing education for two years after the initial presentation date. Registration is not require to watch the live webcast of PHGR; however, you must register for continuing education. Find more information at: http://www2a.cdc.gov/TCEOnline/.

Effective Strategies for Promoting Preconception Health – From Research to Practice

Join NCBDDD for a Webinar on January 30, 2013, 1:00PM – 2:00PM EST
Join NCBDDD for a complimentary webinar to learn more about how to improve the health of women of childbearing age. Panelists include three contributors to the January Special Preconception Health Issue of the American Journal of Health Promotion and Dr. Sarah Verbiest, CDC Senior Advisor to the National Preconception Health and Health Care Initiative. See below for a full list of featured presenters:

• Linda Squiers, PhD, Senior Health Communication Analyst, RTI International
• Megan A. Lewis, PhD, Senior Research Scientist, RTI International
• Paula Gardiner, MD, MPH (Invited), Assistant Professor and Assistant Director of Integrative Medicine, Boston University School of Medicine Department of Family Medicine
• Arden S. Handler, DrPH, Professor, Community Health Sciences and Co-Director, Maternal and Child Health Program, University of Illinois at Chicago School of Public Health
• Sarah Verbiest, DrPH, MSW, MPH, Executive Director, UNC Center for Maternal and Infant Health
CDC Senior Advisor Consultant, National Preconception Health and Health Care Initiative
• Betsy Mitchell, PhD, CDC National Center on Birth Defects and Developmental Disabilities

Register now –space is limited! Click here to reserve your Webinar seat! After registering, you will receive a confirmation email containing information about joining the Webinar.

Folic Acid Awareness Week

March of Dimes Blog: News Moms Need
As part of Folic Acid Awareness Week (January 6-12th, 2013), NCBDDD recently served as guest blogger on the March of Dimes blog: News Moms Need. View Christina Kilgo’s folic acid blog here: http://newsmomsneed.marchofdimes.com/?p=12707 and Coleen Boyle’s blog around the recent twitter chat here: http://newsmomsneed.marchofdimes.com/?p=12729

Morbidity and Mortality Weekly Report (MMWR) Announcement
We’ve included an announcement on National Birth Defects Prevention Month and Folic Acid Awareness Week in the January 11th issue of MMWR.

National Birth Defects Prevention Network Educational & Promotional Materials

The National Birth Defects Prevention Network has educational and promotional materials available via their website: http://www.nbdpn.org/bdpm2013.php. Feel free to use these materials to promote birth defects awareness and prevention. Please visit the NCBDDD’s birth defects website at www.cdc.gov/birthdefects for more information, including the latest research, data & statistics, podcasts, and more!

NCBDDD has Three New Profiles on Sharecare, the Popular Consumer Website Associated with Dr. Oz. Check it Out!

• Althea Grant:
• Susanna Visser:
• Coleen Boyle:

News from our Partners

NBDPN’s Parent Advisory Group Commemorates National Birth Defects Prevention Month

The National Birth Defect Prevention Network’s (NBDPN) Parent Advisory Group has developed a Birth Defects Awareness Campaign to commemorate National Birth Defects PreventionNBDPN logo Month: Birth Defects are Common, Costly, and Critical. The campaign launched on January 2, 2013, with the hope that the messages and materials will reach every country in the world. As part of the campaign, a free Public Service Announcement (PSA) video and toolkit have been made available in both English and Spanish. Both the PSA and toolkit materials may be translated into any language.
Although birth defects are the leading cause of death in infants and young children, the cause of most birth defects remains unknown. Preventing birth defects and leveraging intervention services for families in need are two important public health priorities that require a sustained commitment of resources. To get these resources, help is needed to create awareness globally. Please consider helping make 2013 the year to improve awareness among the public, health providers, policy makers, and officials.

Resources Available from the National Blood Clot Alliance

Online Learning for Healthcare Professionals
NBCA logoThe National Blood Clot Alliance (NBCA) is offering online learning for healthcare professionals: Stop The Clot® – What Every Healthcare Professional Should Know. NBCA submitted the continuing education renewal application forms and revised the entire course content, and was approved for two years of continuing education, from June 2012 to June 2014. Content includes lessons on Basics of Blood Clots, Basics of Thrombophilia, Anticoagulant Medications, Post-Thrombotic Syndrome, Pulmonary Hypertension, and Prevention of VTE Recurrence.
The target audience for online learning and webinars includes nurses, nurse practitioners, pharmacists, and physician assistants Click here to register!

The National Blood Clot Alliance archives its Clinical Pearls webinar series on www.stoptheclot.org. These webinars are designed to improve communication skills for healthcare professionals to influence patient adherence. Content focuses on aspects of prevention, risk, and treatment of blood clots and clotting disorders. Past webinar topics have focused on relevant clinical information for healthcare professionals:
• Building a Partnership with the Newly Anticoagulated Patient
• Overcoming the Headache of Fluctuating INRs
• Helping Women Make Choices about Contraception after DVT

The Target audience for online learning and webinars includes nurses, nurse practitioners, pharmacists, and physician assistants. Click here to find archived webinars.

The National Blood Clot Alliance produced an At-A-Glance fact sheet focused on Blood Clots and Anticoagulant Medications that includes frequently asked questions, what to discuss with your doctor, and a mini-glossary. Click here to download this information.

ACHA Webinar – Life with a Single Ventricle: ACHD Patients Living with a Fontan

In this Adult Congenital Heart Association (ACHA) webinar, Dr. Stephen Crumb will describe which congenital heart defects fall intoacha logo the single ventricle category and which operations lead up to the Fontan. More importantly, he will talk about living with the Fontan: What can you expect? What should you look for? Are there predictable challenges? What can you do to stay healthy and vital? You don’t want to miss this webinar—come along on this interesting and informative journey along the pathway called “Life with Single Ventricle” and learn how to live a productive life post-Fontan. Click here to register!

The Friends of NCBDDD is a coalition of government and private sector participantswho 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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