May 2014

In this Issue

Greetings from
the Friends of
NCBDDD Member/
Communications Chair

Parent Corner

News from NCBDDD

Treating for Two:
Safer Medication
Use in Pregnancy

A Downloadable Slideshow
on Riskfactors, Signs and
Symptoms of Deep
Vein Thrombosis (DVT)

Webinar Series
on Bleeding and
Clotting Disorders

Do you Know
About Thalassemia?

NCBDDD’s Fetal Alcohol
Syndrome Prevention
Team Grantee Meeting

62nd Annual CDC &
ATSDR Annual
Awards Ceremony

Do You Know How To
Protect Babies From
Life Threatening Bleeding?

News from our Partners

News from TSA

NACCHO Releases
Research Brief

Fostering Partnerships
and Teamwork in the
Pediatric Medical Home:
A How To Webinar Series

New Resources Focus on
Children and Youth with
Special Health Care Needs

Genetics in Primary Care
Education on Demand


National Down Syndrome
Congress Convention

July 11-13
Indianapolis, IN

2014 Southwest
Conference on Disability

October 7-10
Albuquerque, NM

AUCD 2014 Conference
November 9-12
Washington, DC
*Call for Proposals Due 6/2!


Environmental Factors for
Persons with Disabilitlies

May 28, 2 pm ET

Promising Practice and
Technologies for
Communicating with
Persons with Access and
Functional Needs
During Emergencies

June 4, 1 pm ET

Improved Planning for
Vulnerable Populations
through Use of
Closed PODs

June 5, 2:20 pm ET

CDC Public Health
Grand Rounds

Hepatitis C
June 17, 1 pm ET

Integrating Genetics
into Your Practice
Watch Archive!

Living Life Fully
Post-Mustard or
Senning in the
Adult TFA Patient
Watch Archive!

Fostering Partnerships
and Teamwork in the
Pediatric Medical Home:
A How To Webinar Series
Watch Archive!


Public Health is for
Everyone Toolkit

PHE Toolkit Logo

Maternal and Child
Health Library

blue and white computer

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 6/6.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen
Chair (
Craig Mason
Vice Chair
Sarah Yates
Patrick Johnson
Mary Andrus
Member at Large
Angela Blackwell
Member at Large
Jeff Cohen
Member at Large
Barbara Kornblau
Member at Large
Sara Struwe
Member at Large
Emil Wigode,
Advocacy Coalition Liaison
Annie Acosta,
Advocacy Coalition
Joe Isaacs
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:

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

Greetings from the Friends of NCBDDD
Member and Communications Chair 

Sarah Yates PhotoDear Friends,

Sign up to join our Friends of NCBDDD Communications Committee! We’re interested in communication professionals and other interested staffers from the Friends member organizations to join us. Our goal is to find more effective messages and new strategies to communicate the value of belonging to the Friends of NCBDDD and the value of the work of NCBDDD. For more information, please contact me at

Sarah Yates, JD
Member and Communications Chair

Parent Corner

Julie and Katie Beckett

As an adoptive parent of children with emotional and behavioral challenges, I have experienced how disjointed and fragmented our service system is. The mental health system is by itself fragmented and complicated, but in addition, the mental health system is also very separate from the physical health care system which makes matters worse when attempting to coordinate care. I would often think what a wonderful thing it would be if the systems could work together!  For the last several years we have been working to develop integrated care systems that can provide families who have children with emotional and behavioral health challenges, the needed support and coordination of care that is necessary to enable our kids to meet their optimal potential.  We now have an exciting new program in Iowa to do just that!  As the Executive Director of the Center for Child Health Improvement and Innovation, at the University of Iowa, we are providing technical assistance, practice transformation coaching, training and data analysis for this new community based program that will help improve outcomes for up to 16,000 of Iowa’s children.

Read more…

Julie Beckett

News from NCBDDD

Treating for Two: Safer Medication Use in Pregnancy

NCBDDD has developed three Strategic Health Investments (SHI) that have the potential to expand the Center’s work and have significant public health impacts. The first SHI to be introduced in the Friends’ Newsletter is Treating for Two.  In future issues of the Friends’ Newsletter we will introduce our other SHI.

Read more…

A Downloadable Slideshow on Risk Factors, Signs, and Symptoms of Deep Vein Thrombosis (DVT)

Deep Vein ThrombosisBlood clots can be a serious health condition and everyone can find themselves at risk at some point in life. It is important to recognize the signs, symptoms, and risk factors for deep vein thrombosis (DVT) and a complication of DVT called a pulmonary embolism (PE).  DVT is a condition that occurs when a blood clot forms in one of the deep veins of the body, and a PE occurs when part of the blood clot breaks off and travels through the lung, blocking blood that flows through an artery.  A PE can be fatal.

Although anyone can develop DVT and PE, factors such as immobility, cancer and surgery may increase your risk for developing a blood clot.

To help increase awareness of DVT and PE, the Division of Blood Disorders, CDC, developed a downloadable slideshow, called a widget.   This narrated slideshow describes the risk factors for these conditions, signs and symptoms, and tips for prevention.  You will also receive information on what to do if you suspect you have a blood clot.

Read more…

Webinar Series on Bleeding and Clotting Disorders

The Division of Blood Disorders (DBD) is proud to offer its “Webinar Series on Bleeding and Clotting Disorders.” This new webinar series provides evidence-based information on new research, interventions and emerging issues of interest in blood disorders, as well as innovative approaches in collaborations and partnerships. The next webinar in the series, “Inhibitor Testing: State of the Art,” is scheduled for June 5, 2014 from 2:00-3:00 pm EDT. Connie Miller, PhD, will be the guest presenter. To participate, log on to view the content (; ID:76KHDJ) and dial in to hear the audio (1-866-692-4541).

Do You Know About Thalassemia?

ThalassemiaThalassemia is a serious condition that can lead to organ damage and even death. View’s feature in recognition of International Thalassemia Day on May 8th to find out more about related health problems, treatment, CDC’s work, and what you can do to make a difference.

Read more…

62nd Annual CDC & ATSDR Annual Honor Awards Ceremony

Please join NCBDDD in congratulating its awardees for the 2013 CDC/ATSDR Honor Awards.   NCBDDD is so proud of all awardees and nominees, all of whom were honored during the awards ceremony on Tuesday, May 13.

Read more…

Do You Know How to Protect Babies From Life Threatening Bleeding?

Learn how to protect babies from life threatening bleeding by visiting CDC’s new website on Vitamin K Deficiency Bleeding. The site has been developed to include information on facts about Vitamin K deficiency bleeding, commonly asked questions and answers, recently published articles, podcasts and other multimedia tools, fact sheets and other free materials for download and printing, stories from families and links to other organizations.

News from our Partners

News From TSA

TSA Produces New Video 
National Tourette Syndrome Association (TSA) has produced, “STAND UP for TOURETTE SYNDROME,” a new video that informs elementary school children about Tourette Syndrome. The film also models peer-leadership in schools and shows kids how to respond positively when they encounter teasing and bullying. Please take a moment to view this brief, helpful video and share it widely with educators, clinicians, administrators, and families. “STAND UP for TOURETTE SYNDROME” can be viewed here.

Tourette Syndrome Awareness Month
Tourette Syndrome Awareness Month is May 15-Jun 15! tourette syndrome awareness month  Dozens of awareness events are planned across the country. TSA national chapters will be holding awareness-building walks and other events including Tourette Syndrome events at regional minor league baseball parks, family fun days, basketball tourneys, as well as public education programs. TEAM TSA will be holding marathon running events as well. The National TSA Awareness Walk will be held on Sunday, June 8 in Flushing Meadows, New York City. The entire organization is promoting TS/TSA pride during the month, with a “TEAL TUESDAYS” campaign.  Everyone is encouraged to wear teal (the national TSA color) to promote awareness!

NACCHO Releases Research Brief 

NACCHO LogoLocal health departments play an important role in local systems that serve children, both as direct service providers and as coordinating agencies. The National Association of County and City Health Officials (NACCHO) released “Conversations with Local Health Departments: Parenting Education and Skills-Building Program Implementation Capacity” in April 2014. This research brief explores local health departments’ capacity to support and implement parenting education and skills-building programs. It is available for free at

Fostering Partnerships and Teamwork in the Pediatric Medical Home: A How To Webinar Series 

The National Center for Medical Home ImplementationAAP NCMHI logo (NCMHI) recently hosted a three part webinar series examining three important facets of pediatric medical home implementation: team huddles, care partnership support, and family advisory groups. View these comprehensive “How-To” webinars on the NCMHI Web site and YouTube page, along with detailed speakers notes, powerpoint slides, and answered audience questions.

New Resources Focus on Children and Youth with Special Health Care Needs

blue and white computerThe Maternal and Child Health Library at Georgetown University, with support from the Health Resources and Services Administration’s Maternal and Child Health Bureau, released a new knowledge path and set of resource briefs about children and youth with special health care needs. The knowledge path includes tools for health care practices; training; improving state systems and services; research; and finding data and statistics, journal articles, reports, and other materials. The knowledge path aims to help health professionals, program administrators, policymakers, and researchers learn more about children and youth with special health care needs and their families, to integrate what they know into their work in new ways to improve care, for program development, and to locate training resources and information to answer specific questions. Companion resource briefs are also available, including briefs on resources for families and resources for schools.

Genetics in Primary Care Education On Demand 

GPCI-LogoLearn about genetics in primary on your schedule with the archived webinar series from the Genetics in Primary Care Institute. Watch archived webinars, view presentation slides, and check out the NEW fact sheets for an easy-to-read version of information from the webinars. Topics include family history, genetic testing, genetic counseling, and more.

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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