February 2014

In this Issue

Greetings from the NCBDDD Director

Greetings from the Friends Executive Committee

Parent Corner

News from NCBDDD

New issue briefs on healthy weight for people with disabilities

NCBDDD’s Division of Human Development and Disability: Overview Available

New CDC.gov feature on Muscular Dystrophy Featured on February 18

New Resources to Promote Surgeon General’s 2014 Report

News from our Partners

2014 Disability Policy Seminar

New NACCHO Fact Sheet on Emergency Planning and Preparedness

Family Voices Indiana’s Electronic Network

Fostering Partnership and Teamwork in the Pediatric Medical Home: A “How To” Webinar Series

AAP Children and Disasters Newsletters


ACA Webinar: Pulmonary Stenosis in the ACHD Patient
February 24, 7 -8 pm ET
Friends of NCBDDD & ACA Implementation: National Disability Navigator Resource Collaborative
March 6, 12 -1 pm ET
Understanding Deep Vein Thrombosis (DVT):  What Everyone Needs to Know
March 6, 2-3pm ET
HealthMeet Webinar: Healthcare Related Issues for Individuals with Disabilities
March 12, 2-3 pm ET


2014 AFB Leadership Conference
February 27-March 1
New York City, NY
2014 Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities
March 5-7, 2014
Chicago, IL
2014 NAPNAP Annual Conference
March 11-14
Boston, MA
The Spectrum of Developmental Disabilities XXXVI: Intellectual Disability: At the Precipice
March 17-19
Baltimore, MD
TSA National Conference
March 20-23
Arlington, VA
American Academy of Audiology Annual Convention
March 26-39
Orlando, FL
Disability Policy Seminar
April 7-9
Washington, DC
National Down Syndrome Congress Convention
July 11-13
Indianapolis, IN


RFA-NR14-01 EHDI Quality MeasuresDevelopment of Quality Measures to Facilitate Reporting of Newborn Hearing Screening and Follow-Up Data by Providers to Jurisdictional EHDI Programs

Deadline: February 28

RFA-NR14-02 LTSAE Monitoring Evaluating Developmental Monitoring with “Learn the Signs. Act Early.” In Child Care Settings

Deadline: February 28

RFA-R14-001 EHDI C-Section  Birth by Cesarean Delivery and Failure on First Otoacoustic Emissions Hearing

Deadline: February 28

RFA-R14-002 EMR Rare Conditions
 Linkage of Electronic Medical Records and Administrative Databases: A Novel Tool for Surveillance and Health Services Research for Rare Conditions

Deadline: February 28

RFA-R14-003 Healthy Weight Validating and/or Modifying Mainstream Health Weight Interventions for People with Disabilities

Deadline: February 28

RFA-R14-004 PLAY-MHProject to Learn About Youth – Mental Health (PLAY – MH)

Deadline: February 28

Cerebral Palsy International Research Foundation Research Grant

Deadline: March 1

Small Business Innovation Research (SBIR )and Small Business Technology Transfer (STTR) Grants

Deadline: April 5, August 5, and December 5, 2014

Calling for News from
NCBDDD Partners

Send in news items for the next issue of the Friends of NCBDDD E-Newsletter to Adriane Griffen by March 10!

Friends of NCBDDD
Executive Committee

Adriane Griffen,
Chair (twitter.com/adrianegriffen)
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 NCBDDD Director

DirectorDear Friends,

As you know from my earlier communication, President Obama signed the 2014 Omnibus Appropriations Bill (Labor-HHS is within Division H) on January 17, 2014. The bill included $122,435,000 for the National Center on Birth Defects and Developmental Disabilities, which was a $14.6 million reduction from last year’s appropriation.  This reduction included an $8.2 million cut from last year’s appropriation and the reallocation of $6.4 million from CDC to Administration for Community Living as a result of the transfer of the paralysis resource center.   This reduction was significant in two ways.  First, the reduction included a 31% budget cut for the Division on Blood Disorders.  While budget cuts are always a challenge, this type of cut for a relatively small division was especially impactful on program activities and staffing.  The second area of concern was the continued erosion of investment for birth defects research and prevention. This activity has received a number of small reductions over the last five years and that cumulative impact has hindered our ability to engage in these core activities.  We have also been working hard to finalize the President’s budget for 2015.  While details on this budget are not currently available, we expect this information to be released in early March.  Once released, NCBDDD will convene a partner webinar to review the impacts associated with the 2014 as well as the implications for NCBDDD based on the 2015 President’s budget.

Looking forward, I want to assure you that NCBDDD will keep its mission at the forefront: to promote the health of babies, children and adults and enhance the potential for full, productive living. To us this is a steadfast commitment that we are intent on pursuing.  The work that we collectively do to protect some of the most vulnerable populations is vital. I want to thank you for your passion and committed partnership. We will keep you involved and informed as we determine how to most strategically leverage our resources toward the goal of safer, healthier people.

Coleen Boyle

Coleen Boyle, PhD, MS Hyg
Director, National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Greetings from the Friends Executive Committee

Stay Connected to the Friends!
Help us continue to work together by letting us know if your contact information is up-to-date. Please take this survey to let us know your how we can best contact you and your organization with news, updates, and advocacy opportunities from the Friends of NCBDDD. For questions about membership, contact the Friends of NCBDDD Member and Communications Chair, Sarah Yates at syates@naccho.org or 202-595-1122.

Parent Corner

The California Advocacy Network for Children with Special Health Care Needs
The Lucile Packard Foundation for Children’s Health invites you to join the California Advocacy Network for Children with Special Health Care Needs.  Network members receive the twice-monthly newsletter.  The Network currently includes more than 800 families, physicians, government employees, advocates, teachers, and health plan administrators nationwide.  The newsletter highlights health policy news, research, grant opportunities, events and resources to improve the system of care for children and families.  Also please visit the website for their program on children with special health care needs. For more information contact Janis Connallon at the Lucile Packard Foundation for Children’s Health.

News from NCBDDD

New issue briefs on healthy weight for people with disabilities
There are five new issue briefs that describe what people and organizations can do to help combat obesity among people with disabilities and assist them in achieving healthy weight and an improved quality of life.   Partners can use and share the targeted issue briefs with communities, health departments, employers, schools and healthcare professionals to ensure that nutrition, physical activity and wellness programs include people with disabilities.  CDC’s Division of Human Development and Disability at the National Center on Birth Defects and Developmental Disabilities released the briefs on January 30.

NCBDDD’s Division of Human Development and Disability: Overview Available
The Division of Human Development and Disability (DHDD) at the National Center on Birth Defects and Developmental Disabilities posted a revised division overview document.  This 2-page PDF document includes the division’s vision, mission, and value statements; strategic priorities; and an updated organizational chart.  View the DHDD overview here (links directly to PDF file).

New CDC.gov feature on Muscular Dystrophy Featured on February 18
A CDC.gov feature showcasing new research findings on muscular dystrophy published on February 18.  Visit www.cdc.gov to see the feature and look for promotion of it on social media at @DrBoyleCDC, @CDCgov, and on CDC’s Facebook page.

New Resources to Promote Surgeon General’s 2014 Report

50th Anniversary

New Videos

Two new 50th Anniversary videos have been placed on YouTube.

2014 Surgeon Generals YouTubeChanging Social Norms of Smoking: Madeleine Solomon of Emory University, and the Tobacco Technical Assistance Consortium, examines the social and policy changes that have affected tobacco use by reducing acceptability of smoking.

The Way Things Were YoutubeThe Way Things Were: Over the past 50 years, the social acceptability of smoking has declined significantly; this is a keystone accomplishment of the tobacco control movement. This video explores the importance of social norm change as a primary strategy for improving public health by reducing smoking rates

Social Media

  • Facebook: Watch the new video with Madeleine Solomon as she discusses the social norms & policy changes that help to reduce the acceptability of smoking: http://bit.ly/1keUumg
  • Facebook: Over the past 50 years, smoking has become less socially acceptable than ever before.  “The Way Things Were” highlights accomplishments in public health by changing social norms to reduce smoking rates.   http://bit.ly/1ebbZUI
  • Tweet:  Madeleine Solomon discusses how changing social norms helps reduce the acceptability of smoking. bit.ly/1keUumg #SGR50
  • Tweet:  Over the past 50 years, smoking has become less socially acceptable than ever before. http://bit.ly/1ebbZUI #SGR50

 New PowerPoint Slides and Infographics


“5.6 Million Children” PSA Now Available from MCRC
A new Public Service Announcement (PSA) entitled, “5.6 Million Children” on the Media Campaign Resource Center (MCRC). This PSA is free to use and can be placed onto PSA rotators or as pay for placement in a media buy.  Link directly to the ad.

Save the Date:  Thursday, March 6, 2014, 2-3 pm ET
Understanding Deep Vein Thrombosis (DVT):  What Everyone Needs to Know
Deep Vein ThrombosisThe Division of Blood Disorders (DBD) is proud to announce its “Webinar Series on Bleeding and Clotting Disorders.”  This webinar series provides evidence-based information on new research, interventions, emerging issues of interest in blood disorders, as well as innovative approaches in collaborations and partnerships.

Webinar Description:  March is deep vein thrombosis (DVT) awareness month.  DVT occurs when a blood clot forms in a large vein.  If part of the clot breaks off and travels to the lung, it can cause a potentially fatal complication known as a pulmonary embolism (PE).   DVT and PE represent a major public health problem in the United States.  Estimates suggest that as many as 60,000 to 100,000 Americans die each year as a result of a blood clot.  Many people with DVT/PE have complications that can greatly impact their quality of life. The good news is that many blood clots and complications can be prevented.   It is important for people to be able to recognize the signs and symptoms and know when to seek care.  In this webinar, Beth Waldron, a DVT survivor and the founding director of Clot Connect, a thrombosis education outreach program based at the University of North Carolina at Chapel Hill, discusses how people can be proactive in the prevention and management of DVT /PE.

Who Should Attend:   This webinar is free and open to all who are interested in learning the basics about blood clots.  Topics include risk factors, signs, and symptoms of DVT and PE as well as prevention practices.  There is no pre-registration; however, the number of phone lines is limited.  For more information about the webinar, please contact Cynthia Sayers at cay1@cdc.gov  or 404-498-0020.

News from our Partners

2014 Disability Policy Seminar2014 Disability Policy Seminar Logo

New NACCHO Fact Sheet on Emergency Planning and Preparedness
NACCHO has a new fact sheet on Inclusive Emergency Planning, Preparedness, and Response. This fact sheet includes links to available tools and resources, information about organizations that serve people with disabilities who can be helpful in planning and exercising, and a list of additional reading materials you may consider. http://eweb.naccho.org/prd/?na551PDF

Family Voices Indiana’s Electronic Network
When Family Voices Indiana submitted their grant to become the family to family health information center for Indiana, they thought about how families were getting information. Since they’re parents themselves, they thought about where they went to get information, tell stories, connect with others, find inspiration….and that answer led to social media.

The internet has made the world a lot smaller. Just a decade ago, it was much harder to find other parents with children with rare diagnoses. Thankfully, that is much easier today. Parents are already on Facebook, Twitter, Pinterest, Youtube. Family Voices Indiana made a commitment to meet families where they are, and social media is where many of them are already.

Family Voices Indiana began with a blog and yahoogroup in 2005. Since then, they have expanded their reach to include Facebook  and Twitter (in English and Spanish), Google+, Youtube, Pinterest, and text messaging. If families need help, Family Voices Indiana hopes to be there for them. You can find all of their social media links here: http://www.fvindiana.org/news

Fostering Partnership and Teamwork in the Pediatric Medical Home: A “How To” Webinar Series
The National Center for Medical Home Implementation (NCMHI) in the American Academy of Pediatrics (AAP) is hosting a free 3-part webinar series February through April 2014! Faculty will discuss “how to” strategies for implementing team huddles (February), enhancing care partnership support (March), and starting and supporting family advisory groups (April). Examples of best practices currently being utilized will be provided. The first webinar, “Implementing Team Huddles” will take place on February 28, 2014, noon – 1 pm CST.  Register for this webinar here and find more information about the webinar series through the NCMHI 2014 Webinar Series Web site.

AAP Children and Disasters Newsletters
The American Academy of Pediatrics (AAP) is an organization of more than 60,000 pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. The AAP has been active in disaster preparedness and response for many years. A Disaster Preparedness Advisory Council (DPAC) oversees relevant AAP initiatives, including implementation of an AAP Strategic Plan for Disaster Preparedness. The DPAC and AAP staff maintain the Children and Disasters Website  and produce electronic newsletters on a regular basis. These newsletters provides information on priority activities, along with upcoming events and resources. The DPAC includes 6 pediatricians who are experts in disaster medicine, and liaisons to the US Food and Drug Administration, Office of the Assistant Secretary for Preparedness and Response, Centers for Disease Control and Prevention (CDC), Department of Homeland Security, and the National Institute for Child Health and Human Development. Previous AAP Disaster Preparedness Contact Network Newsletters can be found here including this month’s newsletter. Individuals who wish to receive future newsletters and other communications can e-mail DisasterReady@aap.org to be added to the distribution list.

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

%d bloggers like this: