February 2018

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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
Dear Friends of NCBDDD,

Greetings from the Executive Committee! We hope folks are surviving the second half of winter, though it feels as though summer has already arrived in Washington, DC.

We are grateful to everyone who attended the Friends annual in-person meeting in mid-February. For those unable to attend, you will find the slides for the event below. Please let me know if I can provide any additional information about the proceedings or plans for the year ahead.

Thanks for your continued support for the Friends!
Best,
Becky Abbott
Chair, Friends of NCBDDD
rabbott@marchofdimes.org

NCBDDD’s Fiscal Year 2017 Annual Report

annual report

NCBDDD recently announced the launch of the NCBDDD Fiscal Year 2017 Annual Report entitled: From Saving Babies to Protecting People: NCBDDD Making a Difference Across the Lifespan in 2017. The 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. Read more..

Friends of NCBDDD In-Person Meeting

On February 13, the Friend of NCBDDD held our annual in-person meeting. Attendees heard updates from Dr. Boyle and discussed the Friends’ plan for the year ahead. The slide deck for the presentation can be found here.

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!

Saving Babies
CDC Publishes New Analysis of US Zika Birth Defects Surveillance Data

New online CDC tool can help public health officials plan for deliveries of infants to women with Zika virus infection in pregnancyOn January 26, CDC published a new Morbidity and Mortality Weekly Report describing 2016 Zika Birth Defects Surveillance data. This is the first report on the prevalence in the US states and territories of birth defects most strongly linked to Zika virus infection during pregnancy since the Zika virus outbreak in the Americas began.

Researchers examined approximately 1 million birth records from 15 states and territories and found about 3 out of every 1,000 babies born had a birth defect strongly linked to Zika, and a 21% increase in the birth defects most strongly linked to Zika in areas with local transmission in the second half of 2016 when compared to the first half of the year.

The results from this study emphasize our continued need to collaborate to protect mothers and babies. You can find the publications at the links listed below.

New Online Training Courses on Fetal Alcohol Spectrum Disorders

Collaborative for Alcohol Free PregnancyHealthcare professionals play a critical role in the prevention, identification, and management of fetal alcohol spectrum disorders (FASDs).

The Centers for Disease Control and Prevention (CDC) and the Collaborative for Alcohol-Free Pregnancy announce the availability of free online courses, covering a range of topics to support these efforts. The target audiences for these courses include family medicine doctors, obstetrician-gynecologists, pediatricians, nurses, medical assistants, and social workers. For more information and to access the courses and related resources, please visit CDC’s new FASD Training page at http://www.cdc.gov/fasdtraining.

New Study Finds That A Growing Number of Reproductive-Aged Women are Filling Prescriptions for ADHD Medicine

patient doctorAttention-deficit/hyperactivity disorder (ADHD) affects people of all ages, including adult women. A study from the Centers for Disease Control and Prevention (CDC) found the percentage of privately-insured U.S. women aged 15-44 who filled a prescription for a medicine to treat ADHD increased nearly 350% between 2003 and 2015. Options for managing ADHD symptoms during pregnancy should be discussed with a healthcare provider as women consider getting pregnant.

Read the Key Findings: https://www.cdc.gov/pregnancy/meds/treatingfortwo/features/kf-reproductive-aged-women-ADHD-meds.html

Spread the word about this study!

Please share the Key Findings on your social media channels or share/retweet/favorite from @CDC_NCBDDD

Protecting People background imageProtecting People
My Life, Our Future: Advancing Hemophilia Care Through Genomics

Hemophilia A and B are X-linked bleeding disorders that affect 1 in 5,000 male births. Many female relatives of males impacted by hemophilia are genetic carriers and may have bleeding symptoms. Hemophilia A and B result from DNA sequence variants in the F8 and F9 genes, respectively; these variants inform hemophilia inhibitor risk and bleeding severity. In 2012, surveys showed that only approximately one in five patients with hemophilia in the United States had F8 or F9 DNA analysis performed to provide more information about their disorder. My Life, Our Future (MLOF) is a partnership between Bloodworks Northwest, the American Thrombosis and Hemostasis Network, the National Hemophilia Foundation, and Bioverativ (formerly Biogen), to fulfill this unmet need, providing free clinical DNA variant analysis and establishing a research repository. MLOF collaborates with people with hemophilia and their families as well as hemophilia treatment centers across the United States. As of January 2018, 11,355 patients, carriers, and potential carriers enrolled in the project, and more than three in four participants consented to provide samples and clinical data to the MLOF Research Repository. In this webinar, Barbara Konkle, MD, the principal investigator for MLOF, will provide an overview of MLOF, share results of genetic analyses of participant samples, and discuss potential research advances through the MLOF Research Repository. Register I Event Flyer

helpingChildren@2x_bacgroundHelping Children
2018 Grant & Scholarships from Child Neurology Society & Child Neurology Foundation

child-neurology-foundation-logoThe Child Neurology Society (CNS) is the professional organization for pediatric neurologists and the Child Neurology Foundation (CNF) is a connective center of education and support for children and families living with neurologic conditions. To offer ongoing support of new research in the field of child neurology, CNS and CNF proudly announce the following opportunities. 

Improving Health No BackgroundImproving Health
Updated Duchenne Muscular Dyrstrophy Care Considerations Published

The latest Duchenne muscular dystrophy (DMD) care considerations have been published in Lancet Neurology. These three articles offer the latest clinical considerations to improve care and quality of life for people living with DMD. Clinicians who specialize in treating people with DMD developed them based on current evidence for optimal care reported in the literature and their own clinical experiences. These care considerations, funded by the Centers for Disease Control and Prevention (CDC) and developed in collaboration with clinical experts and advocacy group representatives, are intended to raise the standards of care, help clinicians provide the best possible care to people with DMD, and give families and caregivers the necessary information to manage their care. Please read more and see the updated care considerations here.

Atrial Arrhythmias in Adult Congenital Heart Disease

ACHAAre you aware that abnormal heart rhythms are a common problem as patients with congenital heart disease get older? When the rhythms come from the top chamber of the heart, they are called atrial arrhythmias. Diagnostic and treatment options have rapidly improved over the past decade. Drs. Jonathan Ginns and George Thomas will talk about the types and causes of these rhythms. They will also discuss how your ACHD cardiology team can prevent and manage the rhythms using the latest technologies. You don’t want to miss this webinar.  Register I Event Flyer

APHA Disability Call for 2018 Nominations

apha-disability-sectionDo you have a colleague who has made an outstanding contribution to advance disability and health? Submit a nomination! Nominators do not need to be members of the APHA Disability Section. See the attached eligibility criteria for each award listed to determine the nominee’s membership requirements associated with each particular award. Read more…

DRDC – Seven Research Opportunities Available

drdc-logoThe CDC funded Disability Research and Dissemination Center announces seven new grant opportunities for FY18 at  https://www.disabilityresearchcenter.com/research/ The applications are due no later than March 5, 2018, with projects beginning in the fall. Read more…

Capitol Hill Luncheon on Tourette Syndrome: March 1

The Tourette Association of America invites you to a Congressional Children’s Luncheon Briefing to learn more about Tourette Syndrome. The briefing will take place Thursday, March 1, from noon to 1:00p in 325 Senate Russel Office Building. Be RSVP February 26 to Diana Felner (Diana.Felner@tourette.org). Event Flyer

 
News from NCBDDD
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
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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 2/9/2018. 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.