January 2014

In this Issue

Greetings from the NCBDDD Director

Parent Corner

News from NCBDDD

New Vitamin K Fact Sheets and Podcast Now Live

New State Birth Defects Tracking Grantee Profiles

CHOICES: A Program for Women about Choosing Healthy Behaviors

Alcohol Screening and Brief Counseling

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

Webinar Series on Bleeding and Clotting Disorders

CDC Vital Signs

News from our Partners

2014 Disability Policy Seminar

NACCHO Fellowship Opportunity

New Navigator Resource from AAHD

New Training Module from AUCD and HealthMeetTM

2014 NAPNAP Annual Conference

TSA Announces 2014 Biennial National Conference

APHA Disability Section Call for 2014 Awards Nominations


2014 AFB Leadership Conference

February 27-March 1

New York City, NY

2014 NAPNAP Annual Conference

March 11-14

Boston, MA

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


CDC Public Health Grand Rounds:

Science Impact

January 21, 1 pm ET

Living with and Managing Heart Failure in the Adult with CHD

January 30, 7 – 8 pm ET


OAR Graduate Research Grant

Deadline: February 14

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

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

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

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*

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

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

*Deadline: February 28

Cerebral Palsy International Research Foundation

Research Grant

Deadline: March 1

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 February 10!

Friends of NCBDDD Executive Committee

Adriane Griffen, Chair

Follow Adriane on Twitter!

Craig Mason, Vice Chair

Sarah Yates, Membership/Communications
Patrick Johnson, Secretary
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 Co-Chair

Joe Isaacs, Advocacy Coalition Co-Chair

Roberta Carlin, Past Chair

NCBDDD’s Social
Media Corner

February 7 – 14 is Congenital Heart Defects Awareness Week. Look for a special feature on CDC.gov and tweets from Dr. Coleen Boyle (@DrBoyleCDC).

Follow NCBDDD Leadership on Twitter:


Greetings from the NCBDDD Director

DirectorDear Friends:As you may be aware, on Friday, January 17 President Obama signed the 2014 Omnibus Appropriations Bill (Labor-HHS is within Division H). The bill includes $122,435,000 for the National Center on Birth Defects and Developmental Disabilities (NCBDDD), which is a $14.6 million reduction from last year’s appropriation.  This reduction includes 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 is 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 is especially impactful on program activities.  The second area of concern is 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 is hindering our ability to engage in these core activities.

Center and agency leadership are actively developing operating plans to project the allocations and impacts of these fiscal changes. We will provide more information on the impact of these budget challenges in the near future. 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

Parent Corner

Project Carson

Dealing with the diagnosis of your child can be very stressful and heartbreaking.  In dealing with our own personal experience, we decided to help make a change.  Our goal with Project Carson is to offer families, the one-to-one help, resources and support you need during this challenging time in your lives.

                                                            Carson’s Mommy and Daddy,                                                                                  Cassie and Matt


Project Carson is a Parent-to-Parent support program which provides emotional and informational support to parents who receive a prenatal or at birth diagnosis.  Project Carson offers support through a partnership of professionals, organizations, and parents who have personal experience in receiving a prenatal or at birth diagnosis.  Three North Dakota family organizations, Designer Genes of Bismarck, Pathfinder Parent Center and Family Voices of North Dakota are sponsoring this collaborative project.

Project Carson is housed in Family Voices of North Dakota’s Parent-to-Parent Program.  Parents are contacted within 24 hours and then provided with information on current national, state and local services that are available for them to access both prior to birth and following birth.  Parents are also offered to be connected to another parent who has received the same or similar diagnosis or who has walked down this unexpected path.  Currently, Project Carson has received 58 referrals from medical professionals and parents.

For more information on Project Carson you can visit the Family Voices of North Dakota’s website at: www.FVND.org, or call us at 1-888-522-9654.


News from NCBDDD

New Vitamin K Fact Sheets and Podcast Now Live!

As a follow up to the recent MMWR highlighting the importance of Vitamin K injection for infants, NCBDDD has released a new fact sheet to educate expectant parents on this topic in both English and Spanish.  The key message being communicated in the fact sheet entitled, Protect Your Baby from Bleeds – Talk to Your Doctor about Vitamin K,  is that a single vitamin K shot at birth protects babies from developing dangerous bleeding which can lead to brain damage and even death.  Expectant parents are encouraged to ask their doctors about the benefits of Vitamin K before delivery and to protect their newborns by making sure they get the shot right after birth. The fact sheet defines vitamin K and vitamin K deficiency bleeding and answers questions about prevention, warning signs, safety of Vitamin K, and more.

In addition to the fact sheets, NCBDDD has released a new podcast geared towards educating parents and professionals on this topic.  In the podcast, Dr. Lauren Marcewicz, a pediatrician with CDC’s Division of Blood Disorders, speaks about vitamin K deficiency bleeding in infants, the importance of the vitamin K shot at birth, and how healthcare providers can provide the best information to their expectant parents.  Listen to the podcast by clicking here now. Please share this link widely.

New State Birth Defects Tracking Grantee Profiles

NCBDDD has updated profiles and Web pages of its state birth defects tracking programs. Each state page describes the program, provides examples of how they are translating data into action, quotes stakeholders about how the program is making a difference, and links to a printable pdf factsheet.

CHOICES: A Program for Women about Choosing Healthy Behaviors


We are pleased to announce that CHOICES: A Program for Women about Choosing Healthy Behaviors is now included in the Substance Abuse and Mental Health Services Administration (SAMHSA) National Registry of Evidence-based Programs and Practices (NREPP).  Non-pregnant women enrolled in CHOICES can lower their risk of an alcohol-exposed pregnancy by reducing or stopping risky drinking, using effective contraception, or both. NREPP is a searchable online registry of substance abuse and mental health interventions. The registry description of CHOICES can be found here. More information on CHOICES can be found on CDC’s FASD website here.

Alcohol Screening and Brief Counseling

On January 7, 2014, CDC released a Vital Signs and Morbidity and Mortality Weekly Report article on alcohol screening and brief counseling.  This week, on January 14, CDC’s Office for State, Tribal, Local and Territorial Support held an hour-long teleconference in a town hall format to talk about the Vital Signs topic. The teleconference featured three speakers to discuss report’s findings and examples of implementation of alcohol screening and brief counseling through Kaiser Permanente of Northern California and the New York City Department of Health and Mental Hygiene. The presentations are available at http://www.cdc.gov/stltpublichealth/townhall/2014/01/vitalsigns.html.

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

50th Anniversary

January 2014 marks the 50th anniversary of the first Surgeon General’s Report on Smoking and Health. We now know that smoking causes a host of cancers and other illnesses and is still the leading preventable cause of death in the United States (killing 440,000 people each year). The 1964 landmark report, released by Surgeon General Dr. Luther Terry, was the first to definitively link smoking with lung cancer and heart disease. As the first document to scientifically establish the link between smoking and ill health, this report laid the foundation for tobacco control efforts in the United States.

In the 50 years since the release of the first report, 30 additional Surgeon General’s Reports have increased our knowledge and understanding of the devastating health and financial burdens caused by tobacco use.  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 the Centers for Disease Control and Prevention’s Office on Smoking and Health, has developed a Web site 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 www.surgeongeneral.gov/tobacco to view the resources and to sign up to receive email updates or INFO2014SGR50@CDC.GOV for general questions or sharing for promoting this historic anniversary.

Webinar SeriesWebinar Series on Bleeding and Clotting Disorders

NCBDDD’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, entitled “Venous Thromboembolism and Cancer,” will take place February 6 , 2014, from 2 to 3 pm EST.  Guest presenter is Alok A. Khorana, MD, the Sondra and Stephen Hardis Chair in Oncology Research and Director of the Gastrointestinal Malignancies Program at Taussig Cancer Institute of the Cleveland Clinic.

Dr. Khorana will address the following topics:

  • Burden of venous thromboembolism (VTE) and cancer
  • Current risk assessment strategies for guiding outpatient prevention practices
  • A validated risk score for VTE and cancer
  • The application of risk assessment tools in clinical settings

For more information about the webinar, please contact Cynthia Sayers at cay1@cdc.gov.

CDC Vital Signs: Alcohol screening and brief counseling is an effective but underused health service

This month’s CDC Vital Signs* report presents latest findings on how infrequently health professionals talk with adults about their alcohol use. At least 38 million adults in the United States drink too much. Most are not alcoholics. Drinking too much causes about 88,000 deaths in the United States each year, and was responsible for about $224 billion in economic costs in 2006. It can also lead to many health and social problems, including heart disease, breast cancer, sexually transmitted diseases, fetal alcohol spectrum disorders, motor-vehicle crashes, and violence. Talking with a patient about their alcohol use is an important first step in screening and counseling, which has been proven effective in helping people who drink too much to drink less.

CDC used 2011 Behavioral Risk Factor Surveillance System data to analyze self-reports of ever being “talked with by a health provider” about alcohol use among U.S. adults aged 18 and older from 44 states and the District of Columbia.

Main Findings

  Main Findings  

  • Only 1 in 6 adults overall and 1 in 4 binge drinkers report that a health professional has ever talked with them about their alcohol consumption.
  • Even among adults who binge drink 10 times or more a month, only 1 in 3 have ever had a health professional talk with them about alcohol use.
  • Only 17% of pregnant women have talked with a health professional about their drinking.


To increase alcohol screening and counseling, doctors, nurses, health plans, and insurers can

  • Screen all adult patients for alcohol use as part of their usual services. Use current guidelines to do this effectively. Counsel, refer, and track those patients who need more help.
  • Advise women not to drink at all if there is any chance they could be pregnant.
  • Recruit and train nurses, social workers, and health educators in a practice to screen and counsel all patients.
  • Through insurers and employers, provide insurance coverage for alcohol screening and counseling.

Why do this?  Alcohol screening and brief counseling can reduce the amount of alcohol consumed on an occasion by 25 percent among those who drink too much. It is recommended for all adults, including pregnant women. As with blood pressure, cholesterol and breast cancer screening, and flu vaccination, it has also been shown to improve health and save money.

 What you can do:  Visit the Alcohol Screening and Counseling Vital Signs Web page to find the Vital Signs MMWR article, fact sheet, and other materials.

NCBDDD has partnered with CDC’s National Center for Chronic Disease Prevention and Health Promotion in these efforts. We look forward to continuing our work together, and with you as our partners, to ensure that we do all we can to make alcohol screening and counseling a routine part of adult preventive care.

News from our Partners
2014 Disability Policy Seminar

2013 Disability Policy

NACCHO Fellowship Opportunity
NACCHO is seeking applications for two paid graduate-level fellowships to work as a part of our Health and Disability Project.  Fellows will work under the guidance of the Health and Disability Staff at NACCHO’s Headquarters in Washington, DC. Fellows will work with NACCHO staff members to increase the number of states thoughtfully including people with disabilities into mainstream public health promotion activities; educate public health workforce on the inclusion of people with disabilities into program activities and interventions; and conduct a study on current levels of funding, staffing, and programmatic activities at state and local health departments focusing on the health of people with disabilities.

As a part of their fellowship, fellows will receive mentorship and guidance from NACCHO’s experienced health and disability staff. Graduate students (Masters or PhD students) in public health, health education, or related field preferred. Students currently in school and who recently completed school will be considered. Prefer students with background or interest in disability/disability studies. Students with disabilities are strongly encouraged to apply.  Visit NACCHO’s website to learn more about the positions and to apply.

New Navigator Resource from AAHD

New Navigator

The American Association on Health and Disability (AAHD) is pleased to announce the publication of a technical assistance guide for the National Disability Navigator Resource Collaborative (NDNRC). The “Guide to Disability for Healthcare Insurance Marketplace Navigators” is designed to inform navigators and other enrollment specialists about special considerations people with disabilities face as they shop for healthcare coverage and it can be found here: http://www.nationaldisabilitynavigator.org/ndnrc-materials/disability-guide/

New Training Module from AUCD and HealthMeetTM
Understanding Health and Health Promotion for People with ID: Module 1” is now available for trainees and early career professionals to use to gain an understanding of important health issues for adults with intellectual disabilities.  This is the first of two modules that have been developed by AUCD with support from the HealthMeetTM Project of The Arc.  Please provide feedback on Module 1 at http://svy.mk/1fjFg0H.

Work on Module 2, which concerns communication aspects of health and health care for adults with intellectual disabilities, is currently under development. If you have recommended resources, links, training modules or have suggestions about what you would like to see included in this module, please tell us at: http://svy.mk/1lJ9JFL.

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.

APHA Disability Section Call for 2014 Awards Nominations

Do you know someone who has made a significant contribution through scholarship, teaching, practice and/or advocacy to advance the health and quality of life of people with disabilities?  Now is the time to nominate that person for the APHA Disability Section Awards. Join us in honoring those who have made significant contributions to the field of disability within the context of public health. Students are encouraged to nominate a fellow student or mentor.  The Disability Section offers the following awards: 1) Lifetime Achievement, 2) Allan Meyers, 3) New Investigator, 4) Student Member, and 5) Advocacy.  To obtain a nomination form, please contact Adriane Griffen, APHA Disability Section Awards Committee Chair, at agriffen@aucd.org with the words “Awards Nomination Form Request” in the email subject line. The deadline for nominations is 5pm ET Wednesday, April 2, 2014. The winners will be presented with their awards at the 2014 APHA Annual Meeting in New Orleans during the Disability Section Business and Awards Meeting.

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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