May 2015

May 2015

♦ Saving Babies

♦ Protecting People

♦ Helping Children

♦ Improving Health

♦ News from NCBDDD

♦ Submit Here

Family Representative Liaisons – Connections Across Thematic Areas

The Friends of NCBDDD believe Family-Professional Partnerships play an important role throughout the lifespan. For this reason, we are so excited to begin our important work with the 7 Professional Family Representative Liaisons who will work to enhance the mission and activities of the Friends of NCBDDD.   The mission of the NCBDDD is organized around 4 thematic areas and the Family Liaisons will work side by side with a champion in each thematic area.   Sometimes, the parent or family member is seen as only needed from birth through childhood, however there can be no doubt that the Family Partner is one that bridges the Lifespan.   Shifts in thinking introduced terms like Family- Centered care which “honors the strengths, cultures, traditions, and expertise that everyone brings to a respectful family-professional partnership.”[i]   The Family Liaisons are namely: (1) Saving babies through birth defects prevention and research: Sheri Romblad – Parent to Parent/Family Voices, CT; Shannon Kaiser –  Home First Family Support Coordinator, MA; and Kayte Thomas – Co-Founder, Medical Liaison, Director of Patient Advocacy, NC; (2) Helping children live their lives to the fullest by understanding developmental disabilities like autism: Jennifer S. Pineo – Family Voices, New Hampshire and Christy Sears – Family of Connection, South Carolina; (3) Improving the health of people with disabilities: Jeannette Mejias – Statewide Parent Advocacy Network of New Jersey and Marlyn Wells – Family Voices Program Coordinator, F2F, North Carolina. We look forward to their work with the champion organizations and are certain their work will enhance the mission and activities of the NCBDDD.

We are currently working to identify Family Representative Liaisons in the thematic area of Protecting people and preventing complications of blood disorders. We would like to have a family contact for each thematic area as well, to serve as a sounding board for the Champions as they are developing strategies during the year. This commitment would likely include participating in 3-4 short check in calls over the course of the year, as well as reviewing any materials that may be developed. If you have any leads or would like to volunteer for this opportunity, please contact Jennifer Bolden Pitre, Family Voices Program Coordinator, at or Adriane Griffen, Friends Chair, at

The Friends of NCBDDD may be an optimum meeting place in public health for Family Representative Liaisons and Champions of Public Health to meet and work collaboratively to optimize health outcomes for those with disabilities across the life span and the specifically the four focus thematic areas of NCBDDD.


 [i]Hagan JF, Shaw JS, Duncan PM, eds. 2008. Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, Third Edition. Elk Grove Village, IL: American Academy of Pediatrics.

Saving Babies
Optimal serum and red blood cell folate concentrations in women of reproductive age for prevention of neural tube defects: World Health Organization guideline

On April 23, CDC’s Morbidity and Mortality Weekly Report published a policy note highlighting a new guideline issued by the World Health Organization (WHO). The Guideline on Optimal Serum and Red Blood Cell Folate Concentrations in Women of Reproductive Age for Prevention of Neural Tube Defects defines the level at which neural tube defects are best prevented based on population-level biomarkers. According to the guideline, at the population level, red blood cell folate concentrations should be above 400 ng/mL (906 nmol/L) in women of reproductive age, to achieve the greatest reduction of neural tube defects. The WHO guideline can be used as a tool to help countries assess neural tube defects risk at a population level and to inform prevention interventions. CDC has developed a webpage to help public health professionals, policymakers, and scientific staff globally to better understand the guideline’s implications for public health practice. This webpage provides an overview of the guideline, information on how it may be applied at the country level, instructions for requesting technical assistance from CDC, and a link to view the guideline in its entirety.

Birth Defects Surveillance Workshop in Tanzania

During the workshop, participants had the opportunity to celebrate together the first World Birth Defects Day which gave participants the opportunity to see first-hand the potential impact of their work in global birth defects surveillance and prevention.

CDC’s Birth Defects COUNT (BDC) initiative is a global effort aimed at reducing illness and deaths related to folate-sensitive neural tube defects. As countries in Africa have moved to address birth defects, BDC has provided support for the development and implementation of birth defects surveillance programs. On March 1, 2015 in Arusha, Tanzania, a partner group comprising the World Health Organization, the International Federation for Spina Bifida and Hydrocephalus, the International Clearinghouse for Birth Defects Surveillance and Research, the March of Dimes, and the U.S. Centers for Disease Control and Prevention convened a birth defects surveillance workshop. Participants included representatives from Tanzania, Kenya, Rwanda, Malawi, Uganda, and Nigeria. The goal of the workshop was to provide participants with feedback on their country protocols, to help clarify questions they had about surveillance, and to teach participants how to describe and code birth defects so that accurate data may be collected. The participants left the workshop with a clear vision of next steps to implement their surveillance efforts, and with a refined skillset to better support their surveillance and prevention activities. Most importantly, participants left with a new network of like-minded public health professionals committed to birth defects prevention in Africa.


protectingPeople@2x_background Protecting People
National Blood Clot Alliance Receives Accreditation for Pharmacy Contract Hours

In April 2015, the National Blood Clot Alliance received notification that it successfully received accreditation for pharmacy contact hours for its web-based curriculum entitled Stop the ClotTM–What Every Healthcare Professional Should Know. This course recently received accreditation as a designated event for pharmacists to receive 2.5 contact hours in pharmacy education.

This web-based course is self-paced and provides the most current foundational information on assessing and managing patients who have blood clots and clotting disorders. The content covers: 1) Basics of Blood Clots 2) Thrombophilia and Blood Clots 3) Anticoagulation Medication 4) Post-thrombotic Syndrome 5) Pulmonary Hypertension 6) Prevention of Blood Clots.

Other target audiences for this curriculum include physicians, nurses, nurse practitioners, physician assistants, and other healthcare professionals. In addition to pharmacy hours, the course also provides no-cost contact hours in Continuing Education Units (CEUs), Continuing Medical Education Units (CME), Continuing Nursing Education (CNEs) and Continuing Education Units (CEUs).

helpingChildren@2x_bacgroundHelping Children
Mental Health Awareness Month

It is estimated that as many as 1 out of 5 children experience a mental disorder in a given year, and an estimated $247 billion is spent each year on treatment and management of childhood mental disorders. Because of their impact on children, families, and communities, children’s mental disorders are an important public health issue. Learn what CDC is doing about gaps in behavioral treatment for children.

Act Early Northeast Regional Developmental Screening, Referral and Response Conference

Act Early Ambassador LogoThe Act Early Ambassadors from the Northeast States have news to share on the Northeast Regional Developmental Screening, Referral and Response Conference scheduled on May 21 and May 22 in Hartford, CT. The conference will provide a unique opportunity to exchange national and state information on early identification, developmental screening, referral and response strategies and time for state teams to enhance state autism plans. Each state invited up to fourteen stakeholders committed to early identification, developmental screening, and referral and response activities. Breakout sessions are woven in to the agenda to allow time for state teams to gather and identify two to four strategies and outcomes to enhance their state autism plan. Learn More

 Improving Health No BackgroundImproving Health
Women’s Health Awareness Month

The Maternal and Child Health Journal published findings of a search for tools to improve use of clinical preventive services among women with disabilities. As a result of the search, the Centers for Disease Control and Prevention (CDC) and the Association of Maternal and Child Health Programs developed TOOLBOX: Improving the Receipt of Clinical Preventive Services among Women with Disabilities. This toolbox can be used by health professionals to facilitate and deliver clinical preventive services among the more than 28 million women of childbearing age and beyond living with disabilities. Compared with their peers without disabilities, women with disabilities are less likely to receive routine physical examinations, teeth cleanings, hepatitis B vaccinations, cervical and breast cancer screenings, family planning services and other preventive services to improve their health. Key findings from the findings are summarized here:

National Fitness and Sports Month

May is National Fitness and Sports Month. CDC recommends finding and creating opportunities to add more physical activity into your daily routine and encourage family and friends to do the same. All adults, with and without disabilities, need at least 2-and-1/2 hours a week of aerobic physical activity at a moderate-intensity level to increase heart and lung function; to improve daily living activities and independence; to decrease chances of developing chronic diseases; and to improve mental health.

As we celebrate the one year anniversary of the CDC Vital Signs: Disability and Physical Activity — United States, 2009–2012, The Friends of NCBDDD will be hosting a webinar, Physical Activity is for Everybody on Monday May 18th, 2015 1p.m.-2p.m. ET. This webinar will feature how two national organizations, dedicated to the well-being of people with disabilities have built upon the Vital Signs message and encouraged people with disabilities to be physically active.

Better Hearing and Speech Month – May 2015

Free Promotional Materials

May is national Better Hearing and Speech Month. Here is a collection of resources to support your special EHDI promotion efforts. Some are for families, some for partners, and others primarily for health professionals.

Promoting Health & Safety for Workers with Disabilities: Realizing the Promise of the ADA

Promoting Health & Safety for Workers LogoJune 9-10, 2015, Chicago, Illinois

This one day conference is to reach out to employers on recent legislative changes impacting workers with disabilities who are interested in recruiting, hiring, promoting and retaining employees with disabilities and mature workers who may be experiencing age related changes impacting their work capacity. Register Here

Promoting Health & Safety for Workers with Disabilities Flyer


News from NCBDDD
Executive Committee
NCBDDD Social Media Corner
Upcoming chats for @CDC_NCBDDD

Topic: Teen Brain Twitter Chat with Dr. Richard Besser

  • We’ll be talking about why teens act so impulsively, the workings of the teen brain, how research has informed and changed our understanding of the teen brain and ways for parents to support teens.

Host: Dr. Richard Besser, Chief Medical and Health Editor at ABC News and co-hosts @NICHD_NIH, @NIMHgov and @TeenHealthGov.

Date: Tuesday, May 19, 2015

Time: 1pm EST

How to Join: Follow #abcDrBchat, @NICHD_NIH @NIMHgov and @TeenHealthGovon Twitter the date and time of the chat

How toAdd NCBDDD Connect Badge to Your E-mail Signature:

To add the “Connect with NCBDDD” button to an e-mail signature follow the steps below:

  1. Open Microsoft Outlook
  2. Go to File > Options > Mail > Signatures
  3. Right click the graphic below and select “copy”
  4. Paste the graphic into your desired signature in the “Edit signature” field
  5. Click on the graphic and then click the hyperlink icon in the top right of the “Edit signature” field 
  6. Be sure is listed in the URL box and hit OK




Submit Here
button to submit articles to AUCD 360 form News items may be submitted for consideration via email to 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 Anna Costalas by 6/5/2015. Photos and web links are encouraged!!

AUCD | 1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910

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 Anna Costalas

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