March 2018

 

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News from Executive Committee
Saving Babies
Helping Children
Protecting People
Improving Health
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News from Executive Committee

Dear Friends of NCBDDD,

Happy Spring! Hopefully the sunshine and warmer temperatures will arrive for our Friends in the northeast sometime soon.

Your Executive Committee is gearing up for a number of activities in the next couple of months. Our next quarterly webinar will be Thursday, April 26 at 3:00p. Please reserve the time on your calendar and join us for a great conversation. The Advocacy Coalition is also planning upcoming events. Check out the update below for more information about how to get involved with the work of the Advocacy Coalition.

Thanks for your support of the Friends and please contact me with any questions or suggestions.

Best,
Becky Abbott
Chair, Friends of NCBDDD
rabbott@marchofdimes.org

Save the Date! – Friends Quarterly Webinar: April 26 at 3:00p

We hope that you will save the date for our upcoming Friends of NCBDDD quarterly webinar. The webinar will take place on Thursday, April 26 at 3:00p. A formal program and details on how to register will be distributed soon.

New Reports and Fact Sheets from NCBDDDD

NCBDDD has released new materials highlighting the work of NCBDDD in Fiscal Year 2017. The NCBDDD Fiscal Year 2017 Annual Report is a wonderful compilation of NCBDDD’s notable and significant achievements by thematic area over the past fiscal year, including future directions, scientific publications, our budget, and state funding. In addition, NCBDDD has released fact sheets specifically highlighting its work in each thematic area in Fiscal Year 2017. You can find the fact sheets below:

New to the Friends?

new memberHave you recently joined the Friends of NCBDDD listserv? If so, please contact Membership Chair Diana Felner (diana.felner@tourette.org) so that you can be added to our Membership Directory. Thank you for supporting the mission of Friends of NCBDDD!

Interested in Advocacy?

Is your organization interested in educating federal lawmakers about the importance of NCBDDD’s work and advocating for continued support of the Center? If so, please contact Becky Abbott (rabbott@marchofdimes.org) to learn more about the Friends of NCBDDD Advocacy Coalition.

Saving Babies
Zika Supplement in Pediatrics
New online CDC tool can help public health officials plan for deliveries of infants to women with Zika virus infection in pregnancyMotor Abnormalities and Epilepsy in Infants and Children with Evidence of Congenital Zika Virus Infection

In this literature review, Brazilian scientists, in collaboration with CDC and other US researchers, identified reports of motor abnormalities and epilepsy in infants with laboratory-confirmed or clinically suspected congenital Zika virus infection. The findings highlight the severity of the two neurologic conditions and add to what is known about the neurologic effects of congenital Zika virus infection. Read more…

Recognizing the Global Impact of Zika Virus Infection during Pregnancy

pregnantYesterday, the New England Journal of Medicine published a commentary by Dr. Margaret (Peggy) Honein, Director of the Division of Congenital and Developmental Disorders. Dr. Honein comments on a report of a cohort of pregnancies with laboratory confirmed Zika virus in the French territories of the Americas, published by non-CDC authors in the same issue of the journal. The data from the French territories highlight the magnitude of the risk of birth defects associated with Zika. The data also reinforce the continued threat the virus poses to mothers and babies and the need to understand the full range of disabilities and impact on children. The findings from the French territories are consistent with previous reports from the US Zika Pregnancy and Infant Registry regarding the level of risk for birth defects associated with Zika infection during all trimesters, but especially in the first.  You can read Dr. Honein’s article here, and the report of findings from the French territories of the Americas here.

Protecting People background imageProtecting People
Welcome Crystal Watson: ATHN’s New CEO

The American Thrombosis and Hemostasis Network (ATHN) is excited to announce that Crystal Watson has been named the new President and CEO of ATHN. A proven leader, Watson brings more than 25 years of experience working in the bleeding disorders community in both government and nonprofit organizations to her new position. Read more…

Watch a New CDC Expert Commentary on Medscape about Transfusions in Sickle Cell Disease – 2/15/18

researcghThe Centers for Disease Control and Prevention (CDC) invites healthcare providers to watch Dr. Mary Hulihan, a Health Scientist in the Division of Blood Disorders at the CDC, in a new CDC Expert Commentary on Medscape. In the video, Dr. Hulihan discusses the scenarios in which transfusions are appropriate for patients with sickle cell disease, the complications associated with transfusions, and how to reduce the risk of complications from transfusions. Read more…

Hemophilia Treatment Centers (HTCs) in the United States Launch Second National HTC Patient Satisfaction Survey (PSS) March 1st

htcHTCs across the country are asking once again for patients with bleeding disorders to let their voices be heard. HTCs want to know how satisfied patients are with the care they receive at their local HTC. Patients with bleeding disorders (and their caregivers) who had contact with an HTC in 2017 are being asked to take the Second National HTC Patient Satisfaction Survey that began March 1, 2018. Read more…

helpingChildren@2x_bacgroundHelping Children
Self-injurious Behaviors and Autism Spectrum Disorder

The Journal of Autism and Developmental Disorders recently published a new article, Brief Report: Self-Injurious Behaviors in Preschool Children with Autism Spectrum Disorder Compared to Other Developmental Delays and Disorders, using data from the first phase of the Study to Explore Early Development (SEED). SEED is the largest study in the United States to help identify factors that may put children at risk for autism spectrum disorder (ASD) and describe the characteristics of these children compared to children with other developmental disorders. Read more…

New Fact Sheet on the Early Hearing Detection and Intervention Program

NCBDDD has released a new fact sheet detailing the important role NCBDDD plays in the Early Hearing Detection and Intervention Program. Check it out here and share widely.

New Study Finds That Use of ADHD Medicine is Increasing among Pregnant Women

adhdAttention-deficit/hyperactivity disorder (ADHD) affects people of all ages, including adult women. A study from the Centers for Disease Control and Prevention (CDC) found that an increasing number of pregnant women are taking attention-deficit/hyperactivity disorder (ADHD) medicine. The study also found that women who took ADHD medicine during early pregnancy may be more likely to have a baby with some types of birth defects compared to women who did not take ADHD medicine. Read more…

Improving Health No BackgroundImproving Health
New Disability and Health State Profiles from DHDD

NCBDDD is very excited to share with you the Disability and Health State Profiles (including 2014 data from the Behavioral Risk Factor Surveillance System Data – BRFSS). These state profiles include

•  Disability health information by state (physical activity, hypertension, smoking, and obesity),
•  Disability-associated health care expenditures by state, and
•  Percentage of adults with select functional disability types

These fact sheets compare national disability estimates to state-level data. You can use this information to learn more about the percentages and characteristics of adults with disabilities in your state. Click here to see a snapshot of disability in your state!

National Survey on Health Reform and Disability

The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults with disabilities to complete an online survey about getting and using health insurance and health care services. Whether you have private insurance, insurance from an employer, Medicaid, Medicare or no insurance please complete the survey. We want to know how the Affordable Care Act (ACA) may be affecting your life.

Adults ages 18 to 62 with any type of disability, chronic health condition or mental illness are encouraged to participate. The survey should take about 20 minutes to complete and your responses are anonymous.  To go to the survey click here: National Survey on Health Reform and Disability.

Whether or not you complete the survey, you can choose to enter a drawing to win one of five $100 gift cards. If you prefer to take the survey over the phone or have any questions about participating, please call toll-free 1-855-556-6328 (Voice/TTY) or email healthsurvey@ku.edu.

Upcoming Workshop: Adaptive Exercise Workshop for People with Mobility Limitations

The National Center on Health, Physical Activity, and Disability (NCHPAD) will be giving a workshop on “adaptive exercise” for people with mobility limitations, May 2nd, 2018, 2:00-3:00 p.m. EST. If you are someone with a mobility limitation interested in being or staying physically active, this workshop is for you! 

You can attend in-person, at Spaulding Rehabilitation Hospital, 300 1st Ave, Charlestown, MA, or online, from wherever is most convenient for you. Register by clicking here: Registration – Adaptive Exercise.

For more information or accommodations, contact Roberta Steele at 617-624-5960 or roberta.steele@state.ma.us. Deadline for accommodations requests is April 15, 2018. Sponsored by the Health and Disability Program at the Massachusetts Department of Public Health. 

Training Opportunity: Responsive Practice – Providing mammography to women with disabilities

 The Responsive Practice training is online, on-demand, free and eligible for 1 Category A credit from the American Registry of Radiologic Technologists. The 50-minute training teaches mammography technologists to:

  •  Recognize barriers women with disabilities face when accessing mammography services;
  • Acquire strategies and approaches to turn barriers into facilitators and provide disability-competent care; and
  • Employ positioning techniques to obtain high quality images for women with different body types

Register for the training anytime at www.ResponsivePractice.org

Smoking Among Ohioans with Disabilities

Ohio Disability and Health program has released a fact sheet on smoking among people with disabilities in Ohio. Smoking accounts for half a million deaths every year and is of particular concern among people with disabilities. Read this fact sheet to find information that public health practitioners and healthcare providers can use to help people with disabilities who want to stop smoking.

Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity

Significant health disparities exist for adults and children with disabilities that experience multiple or compounded barriers to health and health care as part of similarly disadvantaged  racial and ethnic groups. The Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities at the National Academies of Sciences hosted a workshop examining issues at the intersection of health equity, health disparities, health literacy, and people living with disabilities. The National Academies has released the commissioned paper, Compounded Disparities: Health Equity at the Intersection of Disability, Race, and Ethnicity, accessible from their website here.

 
News from NCBDDD
New Leadership Appointments within the Division of Congenital and Developmental Disorders (DCDD)

On March 15, NCBDDD announced two new leadership appointments within DCDD. The announcement from the Center is below.

We are pleased to have named Dr. Margaret “Peggy” Honein as the DCDD Director and Dr. Cindy Moore as the Chief Medical Officer.

Peggy received her BS degree in Biology from the University of California, Riverside, her MPH from the University of California, Los Angeles (UCLA) and her PhD in Epidemiology from UCLA.   She joined CDC as an Epidemiology Intelligence Service (EIS) Officer in 1997.  Peggy was most recently the co-lead of the Zika Pregnancy and Birth Defects Task Force where she developed and directed the work to advance understanding of the Impact of the Zika virus infection during pregnancy.  Prior to Zika she served 10 years as the Chief of the Birth Defects Branch.   Her scholarly contributions in the field are extensive, and have made strong and critical contributions to the fields of Birth Defects and Developmental Disorders nationally and internationally.  She has over 168 publications including 114 peer reviewed scientific articles, 51 other publications (Editorials, MMWRs, other), and three book chapters. 

Cindy previously served as the DCDD Director for seven years.  As a respected partner and colleague to those of us inside and those outside of the agency as a preeminent geneticist and dysmorphologist, Cindy continues to serve our agency proudly as the world’s expert on Congenital Zika Syndrome.  As the division director she oversaw many successes including, but certainly not limited to: 

  •  Three bi-annual autism surveillance reports; 
  • Scientific support and activities to promote the folic acid fortification of corn masa flour;
  • Major advances in global folic acid fortification efforts – World Health Organization tools, resources and trainings;
  • Guiding the focus of Fetal Alcohol Syndrome Disorders and the implementation of alcohol screening and brief intervention within the healthcare delivery system;
  • Championing the Treating for Two initiative, the Congenital Heart Disorders consortium; and
  • Co-organizer for the International Birth Defects Meeting — 3 times (and arriving in the Philippines in midst of a tsunami).

We are excited to welcome Peggy and Cindy in their new roles.

Sign Up Today – NCBDDD Partner Alerts Now Disseminated Through GovDelivery

NCBDDD Partner Alerts have transitioned to GovDelivery. Haven’t subscribed yet? Simply click here. When the new window opens, enter your email address, and click “submit”. When the above process is complete, you are subscribed for future NCBDDD Partner Alerts delivered via GovDelivery!

Social Media Corner

Join us on Facebook Live
Topic: Learn the Signs Act Early. Milsesone. Tracker App

Description: Learn about CDC’s Milestone Tracker mobile app with CDC Health Specialist Katie Green and parenting blogger Ari Adams of http://www.lovepeaceandtinyfeet.com/.
Date: Monday, March 5, 2018
Time: 12PM ET
Host: @MODHealthTalk
To join: Use #Prevent2Protect

Please Add NCBDDD Connect Badge to Your E-mail Signature:
  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. Click on the graphic and then click the hyperlink icon in the top right of the “Edit signature” field
  7. 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 4/10/2018. Photos and web links are encouraged!!

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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.