May 2018

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News from Executive Committee
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News from Executive Committee

Dear Friends of NCBDDD,

Greetings from the Executive Committee! We hope you are enjoying your May and send our best wishes to those of you that are finishing out the school year and preparing for the summer.

In the coming weeks, your Executive Committee will be transitioning to a new service to manage the Friends listserv. With this transition, you’ll be see refreshed newsletter designs and partner notices. We’re also working to streamline website content. We’ll be sure to keep you up-to-date.

On a personal note, I will be out on maternity leave through October 1. During that time, Sara Struwe, President & CEO of the Spina Bifida Association and Vice Chair of the Friends, will be serving as interim chair. Please reach out to Sara with any questions, ideas or concerns.

As always, thanks for your support of the Friends! I look forward to reconnecting with all of you in the fall.

Becky Abbott
Chair, Friends of NCBDDD

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 ( 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 ( to learn more about the Friends of NCBDDD Advocacy Coalition.


Saving Babies
National Birth Defects Prevention Network (NBDPN) Hosts Its 21st Annual Meeting in Atlanta, GA

Oakkey_2018_NBDPN_AM-1With close to 250 attendees, the NBDPN Annual Meeting held March 12-14, 2018 was one of its largest, with about half being first time attendees! The meeting featured plenary sessions on advances in birth defects surveillance and breakout sessions on surveillance practices and data utilization. Networking opportunities were incorporated in many sessions, including mentoring, poster presentations and reception, social event, as well as NBDPN partners’ and committee meetings. Pre-conference trainings on scientific writing and medical record abstraction allowed participants hands-on experience.

Visit the Treating for Two website!

treatingfortwoTreating for Two has recently updated its website and developed some materials for women, healthcare professionals, researchers, and other partners. The 2018 National Women’s Health Week, NCBDDD will be helping to raise awareness about the safety of medicine use before and during pregnancy. Here’s how you can participate: 1. Visit the Treating for Two website: 2. Read and share the fact sheet and conversation starter. 3. Retweet and share CDC social media tagged with #Treating4Two.

Vectorborne Disease Vital Signs

graphCDC’s new Vital Signs report released on Tuesday, May 1, found that cases of diseases from mosquito, tick, and flea bites tripled in the U.S. from 2004 to2016. Researchers also found that during the same time-frame, nine new human diseases spread by bites from infected mosquitoes and ticks were reported for the first time in the United States. The discovery or introduction of these new diseases, such asZika virus, continues to threaten mothers, babies, and the general population. These findings highlight the critical importance of monitoring the effects of emerging threats on the health of mothers and babies and responding to emerging threats as quickly as possible. They also highlight the necessity for travelers to remember to take steps to prevent Zika virus infection as Zika virus transmission continues to occur in many countries around the world.

Zika Virus: AAP Resources to Assist Clinicians and Families

zikaWith the number of people getting diseases transmitted by mosquitos increasing in recent years, pediatric clinicians need to stay up-to-date on the latest guidance and resources related to the Zika virus. The American Academy of Pediatrics (AAP) has a comprehensive Zika virus resource page that includes key information for pediatricians. Clinicians and parents will need psychosocial support when facing a child born with congenital Zika virus syndrome. In collaboration with the Centers for Disease Control and Prevention (CDC), the AAP produced 2 videos and accompanying handouts for families and providers caring for a child with possible or confirmed congenital Zika virus syndrome. These resources are available on the AAP Zika Virus: Psychosocial Support Videos Web page.

Protecting People background imageProtecting People
Sickle Cell Data Collection Program Brief:
Better access to outpatient care may decrease emergency visits and costs

SCD-ER Brief_FINALFor patients with sickle cell disease who lack access to specialists or primary care physicians informed about their condition, health care is often limited to the emergency department. New data from the Sickle Cell Data Collection programs in California and Georgia show that utilization spikes in early adulthood, and that public payers are responsible for the majority of costs associated with these visits. Read more…

22nd Annual Sickle Cell 5k Walk/Run

22nd Annual Sickle Cell 5kHere in Indianapolis, Indiana we are gearing up for the 22nd Annual Sickle Cell 5k Walk/Run. It will be held on Saturday June 23, 2018 at Riverside Park. 2420 E. Riverside Dr. Indianapolis, IN 46208. Registration begins at 8:00 a.m. If you are unable to attend but would like to donate, please contact The Martin Center 3545 N. College Avenue, Indianapolis, IN 46205 (317) 927-5158. We are hoping this year we will have the biggest turnout to date. In order to do that we need 600+ people to attend. Please help us spread the word and make this year the biggest and best Sickle Cell 5k Walk/Run yet. Thank you in advance for your assistance. Event Brochure – Event Flyer

helpingChildren@2x_bacgroundHelping Children
Statewide Parent Advocacy Network Celebrates 30 years! Unveils a new logo

SPAN Logo-transparentJust 30 years ago, a group of parents came together around a kitchen table to start an organization that would help families of children with disabilities become advocates for better lives for children in New Jersey — the Statewide Parent Advocacy Network (SPAN). In the following years, SPAN would grow from a small organization with two programs and a handful of staff to an organization with over 20 state and national projects and 60 staff representing the diversity of our state and nation. SPAN’s work has expanded to serving families of children with and without special needs across all the systems that impact children and families, including education, health, human services, juvenile justice, child welfare, and early childhood. To celebrate its 30th birthday and its growing national and international work, SPAN changed its name to the SPAN Parent Advocacy Network and updated its logo. Submitted by Nicole Pratt, Friends of NCBDDD Member-at-Large & Family Liaison

Young Scientist Research Awards 2018 – applications now available!

chaddEmerging ADHD researchers who are working on a doctoral degree, or have completed a doctoral degree in 2015 or later, are invited to apply to the 2018 Young Scientist Research Awards. Application forms are available at and all required documents due by May 21, 2018. Research may address any area relevant to ADHD, including, but not limited to: biological/genetic underpinnings of the disorder; treatment efficacy; impact on the individual or family; school or workplace accommodations; social stigma and discrimination; public health; and epidemiology. Two researchers will be selected to receive awards.

One in Five Families with Children Has at Least One Child with Special Health Care Needs

One-in-Five-ccDid you know that more than one in five families has at least one child with special health care needs (SHCN) – 23% of families? Families of children/youth with SHCN typically experience greater stress, struggling to meet the needs of their child in a maze of multiple and complex systems of care. Many families find that insurance is not adequate, care coordination is ineffective, and referrals are difficult. Across the country families of SHCN get help from health care financing programs, community supports, and family-centered health care practices. Please help others learn more about the needs of children/youth with SHCN and how to help these families. Read more…

CDC Releases Report on the Number and Characteristics of Children with Autism Spectrum Disorder in 11 communities in the U.S.

autismA new report from NCBDDD’s Autism and Developmental Disabilities Monitoring (ADDM) Network shows that many children are living with autism spectrum disorder (ASD), underscoring the need for services and support, both now and as they grow into adolescence and adulthood

  • An estimated 1.7 percent or 1 in 59 school-aged children were identified with ASD. The prevalence of ASD was higher in 2014 among 8 year olds compared to our last report in 2012, 1.7% or 1 in 59 children compared to 1.5% or 1 in 68 children.
  • A narrowing of racial and ethnic differences in the identification of ASD may account for some of this change in prevalence estimate from the previous ADDM Network report. This finding could indicate that communities are better able to identify ASD in minority populations.
  • Most children (85%) identified with ASD had concerns about their development noted in their records by age 3 years. Yet, less than half (42%) of children with ASD received developmental evaluations by age 3. This lag between first concern and first evaluation may affect when children with ASD can begin to get the services they need.

Learn More
For more information, we invite you to read more about this report’s findings or the full article

Improving Health No BackgroundImproving Health
Be Fierce. Take Control.™

1.pngThe American College of Rheumatology based out of Atlanta has a Lupus Initiative and the following link ( contains resources and information that caregivers of people living with lupus will find helpful. We have also developed a national lupus awareness campaign with the Lupus Foundation of America that helps to raise awareness among young people who are most at risk of developing lupus called, Be Fierce. Take Control™.  –  View Toolkit

New Disability and Health State Profiles from DHDD

DHDS-logo-smNCBDDD 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!

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
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 is listed in the URL box and hit OK


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 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 6/11/2018. 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.

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