February 2017

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News from Executive Committee

Saving Babies

Helping Children

Protecting People

Improving Health

News from NCBDDD

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News from Executive Committee
Executive Committee Members-Welcome and Thanks

dscf3610Our newly elected 2017 Executive Committee members and our 2016 Executive Committee members who are rotating off were recognized at the Friends of NCBDDD In-Person meeting in December. We look forward to working with everyone in the year ahead!

Saving Babies
March 3 is World Birth Defects Day!

birthdefectsEvery year, about 3-6% of infants worldwide are born with a serious birth defect. This represents millions of babies and families with life-altering conditions like spina bifida and congenital heart defects. Birth defects can affect an infant regardless of birthplace, race, or ethnicity. The goals for World Birth Defects Day are to raise awareness about birth defects, reduce stigma, and increase opportunities for prevention.

  • Sign up for the World Birth Defects Day 2017 Thunderclap
    Any time before 10 AM ET March 3, 2017, sign up for the World Birth Defects Day 2017 Thunderclap, which allows supporters to share a unified message at a specific time via Facebook, Twitter, or Tumblr.
  • Create a buzz about birth defects on social media
    Participate in World Birth Defects Day by sharing stories and information about birth defects using the hashtag #WorldBDDay.
  • Read new research and web features
    Check CDC’s birth defects website for more information. We will also be posting web features on the CDC website.

Thank you for your active participation and support of World Birth Defects Day.

Promising Practice Increases Use of Folic Acid in Hispanic Women  for Prevention of Birth Defects

coverA recently released study from the Centers for Disease Control and Prevention (CDC) identifies a promising approach to increasing folic acid awareness, knowledge, and consumption among Hispanic women – the group most likely to give birth to a baby with a neural tube defects in the U.S.

This study, published in the Journal of Women’s Health, examines the use of the Promotora de Salud model for educating Hispanic women about folic acid. This model uses small group education sessions and forges one-on-one connections between promotoras (also known as lay health workers) and the Hispanic women in the communities they serve.

Notable findings include:

  • The proportion of women who reported that they consumed a folic acid vitamin supplement increased from 1 in 20 to 11 in 20 of the participants.
  • The proportion of women who reported taking a vitamin or mineral supplement every day went from about one-quarter to almost two-thirds of the participants.
  • A majority of women said that they were taking the vitamin supplement because the promotora had recommended it.

These findings can inform those who may want to develop programs to help promote folic acid consumption for the prevention of neural tube defects in Hispanic communities. You can read the scientific summary of the article here.

Update from the Zika Coalition

mosquito-zika

The Zika Coalition recently posted its new website! The website includes a list of members, links to coalition letters and materials, and information on additional resources. If your organization would like to learn more about the Zika Coalition, please contact Jaimie Vickery at the March of Dimes.

 

Protecting People background imageProtecting People
Public Health Webinar Series on Blood Disorders: Prevention of Venous Thromboembolism

db8cbefa0f64b7ddbe720d88aff62702March 16, 2017, 2:00 p.m. – 3:00 p.m. ET

Venous thromboembolism (VTE) is an important public health issue and a significant cause of illness and death. VTE results in nearly 100,000 premature deaths in the United States annually with healthcare costs as high as $10 billion. Effective VTE prophylaxis or prevention practices, such as the use of mechanical compression devices or anticoagulant medications, can reduce the risk of VTE by 60%. Improving VTE prevention has been the focus of many performance improvement initiatives. The Johns Hopkins Hospital examined its performance in VTE prevention in 2005. To improve VTE prevention performance, the Johns Hopkins Venous Thromboembolism Collaborative was formed with support from the Center for Patient Safety and Quality Care and hospital leadership. Read more…

 
helpingChildren@2x_bacgroundHelping Children
New Toolkit Featuring Information from NCBDDD’s Learn the Signs. Act Early.

letstalksaboutfeeling

The U.S. Department of Health and Human Services and the U.S. Department of Education joined with Too Small to Fail to release a Fostering Healthy Social and Emotional Development in Young Children Toolkit. As part of the toolkit, you will find developmental milestone information from the Learn the Signs. Act Early. Program. Please explore the toolkit through the links below.

emotional-developmentThis toolkit on healthy social and emotional development includes:

Updates from CHADD and the National Resource Center on ADHD (NRC)
New ADHD and Eating Right Video!

adhdIn this new video from the NRC, ADHD expert Roberto Olivardia explains why people with ADHD may find it harder to eat healthfully in part two of the NRC’s ADHD and Food videos.

ADHD Resources for Spanish Speakers

talkwithspecialistNRC provides an information and referral helpline Monday through Friday, 1 P.M. to 5 P.M. ET. You can call the NRC at 800-233-4050 and press 2 to reach our Spanish-speaking ADHD health information specialist, who can answer your questions and help connect you to resources in your local area.

In addition, there are currently four factsheets in Spanish that are designed to be helpful for parents of children with ADHD, teachers, and adults with ADHD. These include:

  • Preschoolers and ADHD (Los niños en edad preescolar y el TDAH)
  • Psychosocial Treatments for Children and Adolescents with ADHD (Tratamiento sicosocial para niños y adolescentes con TDAH)
  • Educational Rights for Children with ADHD in Public Schools  (Derechos educativos para niños con TDAH en escuelas públicas)
  • Diagnosis of ADHD in Adults (Diagnóstico del TDAH en adultos)

You can find these and other resources at Recursos en español. You can also translate the CHADD website into Spanish. Look in the top right corner for the translator button that displays “Select Language.” Choose Spanish or one of the other eight languages to translate the entire website.

Call or visit www.help4adhd.org/nrc to start finding information and using Spanish-language resources.

Submit a proposal for the 2017 CHADD Annual International Conference on ADHD

chaddThe 2017 CHADD Annual International Conference at the Hilton Atlanta from November 9-11 will be the premier conference showcasing new ideas and innovation in the field of ADHD and related disorders. The call for papers is now open for general and pre-conference sessions, research posters, and innovative programs.

CHADD is seeking educational content that focuses on the following:

  • Diagnosis and treatment
  • Collaborative practices
  • Learning differences
  • Implementation of IDEA and Section 504
  • Educational interventions
  • Multimodal treatment
  • Co-existing conditions
  • Cultural diversity

The deadline to submit an abstract to present a conference session is March 13, 2017. The deadline to submit an abstract for a research poster or innovative program is June 1, 2017.
For more details visit.

Webinar:  5 Ways Nutrition can Impact ADHD Symptoms

askexpertPresenter: Laura Stevens, MS
Date: Wednesday, February 22, 2017
Time: 2:00 p.m. – 3:00 p.m. ET

In this webinar, learn about five adjustments to your diet that may affect ADHD symptoms. Create a plan for where to start when making changes and how to track if they are working. Leave with new information and a plan for using nutrition as a complementary treatment to help improve your quality of life with ADHD. Register Here


New “Pathways” for the Child Neurology Community

child-neurology-foundation-logoThe Child Neurology Foundation(CNF) works to actively connect partners from all areas of the child neurology community. To continue and enhance those connections, CNF proudly announces Pathways an eNewsletter that will feature the latest patient educational information, advocacy events, scholarships, grants, and other opportunities of interest to this population. Please think of Pathways as a sharing platform for your information and resources, as well. Sign up today to receive Pathways.

Improving Health No BackgroundImproving Health
2017 International Research Conference on TSC and LAM: Innovating Through Partnerships2017 IntnatlConfLogo-Final.jpg

The TS Alliance and the LAM Foundation are jointly sponsoring the 2017 International Research Conference on TSC and LAM: Innovating Through Partnerships, which will be held at the Hyatt Regency Washington on Capitol Hill in Washington, DC, from June 22 to 24. Through communication and collaboration of participating senior and junior researchers and trainees, the conference goal is to stimulate and accelerate basic and clinical research to improve health care and quality of life for individuals with TSC, LAM, and potentially many other related disorders including cancer, epilepsy, autism, and rare diseases with overlapping phenotypes. Travel awards will be selected based upon abstracts submitted by March 20. For more information see http://www.tsalliance.org/researchers/research-conferences/.

News from NCBDDD
NCBDDD Happenings:
  • Georgina Peacock (DHDD Director) went to Geneva, Switzerland, in early February to meet with experts from across the world at the WHO’s Rehabilitation 2030 call-to-action meeting. Participants discussed achievable goals to further the health of people with disabilities worldwide.
  • The Children’s Preparedness Unit co-hosted a virtual tabletop exercise with CDC’s Office of Public Health Preparedness and Response. The exercise brought together pediatricians and state public health planners to simulate an infectious disease threat affecting a vulnerable population, and incorporated plans specifically for child safety.
  • Elizabeth Courtney-Long, Health Scientist at the Division of Human Development and Disability’s Disability and Health Branch, coauthored a disability prevalence paper with the Division of Cancer Prevention and Control entitled Cancer Screening Prevalence Among Adults with Disabilities, United States, 2013. It was published late January in Preventing Chronic Disease. A summary of the article can be found here.
Social Media Corner
Please Add NCBDDD Connect Badge to Your E-mail Signature:Open Microsoft Outlook
  1. Go to File > Options > Mail > Signatures
  2. Right click the graphic below and select “copy”
  3. Paste the graphic into your desired signature in the “Edit signature” field
  4. Click on the graphic and then click the hyperlink icon in the top right of 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 http://www.cdc.gov/ncbddd/connect/index.html is listed in the URL box and hit OK

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Submit Here
Do you have an update or event you would like to share with the Friends of NCBDDD? Newsletter items may be submitted for consideration via email to acostalas@aucd.org. Send 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 3/10/2017. Photos and web links are encouraged!!

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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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