August 2017

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News from Executive Committee
Saving Babies
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News from Executive Committee
Greetings, Friends of NCBDDD,
Your colleagues on the Executive Committee hope that you’ve had a wonderful summer and send our well wishes to those Friends that are gearing up for another school year whether you’re a student, parent, or instructor (or maybe you’re all three)! 
The Executive Committee is busy preparing for the next quarterly check-in. Be sure to save the date for September 28th. We would also like to highlight an opportunity to meet with Dr. Coleen Boyle, Director of NCBDDD, during an upcoming visit to Washington, DC. Additional details on the quarterly check-in and meeting with Dr. Boyle are below.
As always, please reach out with any questions, ideas or concerns, and thank you for your support of NCBDDD.
Becky Abbott
Chair, Friends of NCBDDD
SAVE THE DATE: Friends of NCBDDD Quarterly Check-In
September 28th from 3:00 pm ET – 4:00 pm ET
Webinar registration details coming soon!
YOU’RE INVITED: Meeting with Dr. Coleen Boyle, Director, NCBDDD
The Coalition for Health Funding and the Consortium for Citizens with Disabilities invite the Friends of NCBDDD to hear from Dr. Coleen Boyle, Director, CDC’s NCBDDD. She will brief on highlights regarding the Center’s activities and to hear about the impact of the budget on the Center’s activities. Details below.
September 15, 2017
10:00 am – 11:00 am
American Public Health Association
800 I Street, NW
Washington, DC
**No RSVP Required**
Saving Babies
September is Fetal Alcohol Spectrum Disorders (FASD) Awareness Month: Mark Your Calendars & Join Today!
FASDFASDs are physical, behavioral, and intellectual disabilities that last a lifetime. Often, a person with an FASD has a mix of these problems. FASDs are completely preventable if a developing baby is not exposed to alcohol before birth.
Please join CDC, the National Organization on Fetal Alcohol Syndrome (NOFAS), and other partners in the following activities:
Art Contest: A Picture is Worth a Thousand Words
Art Contest
Enter the 2017 FASD Awareness Month art/photo contest. Submit an image of “What FASD means to me” by September 3, 2017.To enter the FASD Month art/photo contest: submit an image, such as a photo or artwork, of “What FASD means to me” with the idea of portraying the reality of how people and families living with FASD have a wide variety of perspectives, and to challenge the assumption that FASD only looks one way. For details, please visit
FASD Awareness Month Packet
FASD Awareness Month PacketCheck out this helpful guide for planning activities around FASD Awareness Month.September 9th is celebrated annually as International FASD Awareness Day to promote education and awareness efforts on FASD. More recently, the month of September has been designated as FASD Awareness Month. FASDs are completely preventable by abstaining from alcohol while pregnant. Despite myths and misconceptions, there is no scientific evidence that confirms a “safe” amount of alcohol that will not affect the developing fetus.
To recognize FASD Awareness Month and Day this year, the NOFAS and its Affiliate Network; the American Academy of Pediatrics (AAP); the American Congress of Obstetricians and Gynecologists (ACOG); and the CDC-funded FASD Practice and Implementation Centers (PICS), and national partners and FASD advocates from across the globe have joined together to produce this packet of materials to assist you in planning your activities and events. Visit for updated details on FASD Awareness Month and International FASD Awareness Day.
  • Thunderclap Campaign
    Please join the Thunderclap campaign scheduled for September 9, 2017 at 9:09 am. This day was chosen so that on the ninth day of the ninth month of the year, the world will remember that during the nine months of pregnancy, the safest option is to abstain from alcohol.
  • Save the Date: Twitter Chat
    On September 6, 2017 at 2pm ET, please join NOFAS, CDC, the American College of Obstetricians and Gynecologists (ACOG), and the National Association of Social Workers (NASW) for a Twitter chat for FASD Awareness Month at #FASDchat. Also joining will be the American Academy of Pediatrics (AAP).
We look forward to your participation next month!
Course on Medical Complications During Pregnancy
Friends of NICHDThe Society for Maternal-Fetal Medicine (SMFM) will host a two-day Course in Chicago called, “Medical Complications During Pregnancy” on September 7and 8, 2017. The Course will use interactive case studies to address congenital heart disease in pregnancy, infectious complications in pregnancy, acute kidney injury in pregnancy, and more. The Course is open to physicians, residents, midwives, nurses, and sonographers. Register by August 28 for a discount on the Course fee. Visit the SMFM website for the complete program, lodging information and to register for the Course.
Webinar: Beyond the Basics: The Impact of Zika Virus on Vision and Hearing
zika.pngAAP Webinar Series on Zika Virus Syndrome
Tuesday, September 5, 2017
1:00 p.m. ET / 12:00 p.m. CT
Registration Details:
Phone: 888-632-5004
Participant Passcode: 987450
Registration Link: (registration is required)
Babies born with Congenital Zika Virus Syndrome (CZVS) can have other findings beyond microcephaly. Often, these infants are seen with vision and hearing abnormalities that may be present at birth, however, these can emerge later. The research in this area is still evolving as more and more babies are born. Experts are seeing a wide range of severity of issues, and are using different methods to treat these infants. During this webinar, participants will learn more about the vision and hearing findings seen in infants with CZVS, new research in this area, the Centers for Disease Control and Prevention (CDC) guidance for evaluation and treatment, and about long term care strategies. Submit questions ahead of time to or live during the Q&A portion of the webinar.
Protecting People background imageProtecting People
Webinar: ASH Sickle Cell Disease Coding Webinar – September 5
ASHProviders treating patients with sickle cell disease (SCD) continually struggle with inefficient reimbursement which can ultimately impact access to care.  The Current Procedural Terminology (CPT) codes and the Diagnosis-Related Group (DRG) codes assigned for these patient visits have a significant impact on reimbursement.  However, there is often a disconnect between a clinician’s documentation and the resulting CPT and DRG codes assigned by a coder.  On September 5, 2017 from 3:00PM – 4:00PM ET, the American Society of Hematology will host a webinar, Coding for Sickle Cell Disease, to outline best practices for documentation of patients with SCD, and the many major comorbidities and complications for which these patients frequently present. The webinar will feature Dr. Michael DeBaun, a leading expert in the care of children with SCD, and Ellen Riker, an expert in public and private insurance reimbursement and coverage policies.  Click here to register. 
Project ECHO Training on Sickle Cell Disease
Project ECHO TrainingA Project Extension for Community Healthcare Outcomes (ECHO)® training will be held on October 23-24, 2017, in Atlanta, Georgia.
The training will be led by the American Academy of Pediatrics, a Project ECHO Superhub, and will be designed specifically for organizations interested in using the ECHO model™ in their own settings to improve the health care of individuals living with sickle cell disease (SCD). The ECHO model increases access to specialty treatment in rural and underserved areas by building capacity amongst front-line physicians to identify, treat, and manage the care of patients with complex conditions. Read more..
helpingChildren@2x_bacgroundHelping Children
Find updated fact sheets on ADHD

UnknownUpdated fact sheets on many ADHD topics for parents, adults and educators are available from the National Resource Center on ADHD.  The most recent updates include Psychosocial Treatment for Children & Adolescents with ADHD in English and Spanish, Educational Rights for Children with ADHD in Public Schools in Spanish, Diagnosis of ADHD in Adults in English and Spanish, and Managing Money and ADHD in English.


Check out two new online communities from CHADD!

ADHD Parents TogetherParents of children with ADHD can connect with other parents to find answers to their questions or have their voices heard in the new ADHD Parents Together online community.  Adults can do the same at the Adult ADHD Support community.  The online platforms are free to join and powered by HealthUnlocked, a social network for health.  CHADD staff contributes weekly questions/issues soliciting the community’s inputs, and monitors contributions and responses from the community.


Improving Health No BackgroundImproving Health
DHDD Moves Fragile X Forward With New Pediatrics Supplement

DHDD Moves Fragile X Forward With New Pediatrics SupplementA new supplement dedicated to fragile X-associated disorders was published in Pediatrics on June 1st. Funded by NCBDDD’s Division of Human Development and Disability, highlights of the supplement include new research on individuals with both fragile X syndrome and autism spectrum disorder, and the first data from FORWARD, the Fragile X Online Registry With Accessible Research Database, which is the largest database of people living with fragile X syndrome in the United States. The supplement contains some of the latest research on these conditions and will be a wide-ranging resource for healthcare professionals and researchers in their efforts to advance knowledge, treatment, and quality of life for individuals with fragile X-associated disorders. For more information read Advancing Treatment and Care for Fragile X Syndrome.

Just Released: 2017 NH Disability & Public Health Report

2017reportfullThe New Hampshire Disability & Public Health Project (DPH) has released its annual NH Disability & Public Health Report. The graphic report provides information on health disparities and health risk factors experienced by individuals with mobility and cognitive limitations in NH, suggesting strategies that policymakers and program managers can use to establish more inclusive programs and initiatives within NH.“We went with a much shorter, more graphic representation of the data this year,” said Kimberly Phillips, project Co-Investigator and co-author of the report. “This allows us to draw people’s attention right to key issues, like employment and physical activity, that really impact the health of people with cognitive and/or mobility disabilities.”
Read more…

@Webinar: Psychosocial Considerations in Adult Congenital Heart Disease (ACHD)

ArterialSwitchFlyer2016 NewLogoMonday, August 28, 2017, 7:00 p.m. – 8:00 p.m. ET

Are you an adult congenital heart disease (ACHD) patient who takes warfarin (Coumadin) as a blood thinner? Do you know about the new blood thinners that are widely used in acquired cardiovascular disease? Have you ever wondered if these can be used in ACHD patients? If so, you don’t want to miss this webinar. Dr. Karen Stout, ACHD Medical Director at the University of Washington and Seattle Children’s Hospital will tell you what these new medications are and whether they can be used in adults with congenital heart disease. Event Flyer

Building Healthy Inclusive Communities

building-inclusive-communities_456pxJuly 24 marked the 27th anniversary of the American Disabilities Act, a momentous step forward for people with disabilities regarding transportation, access to buildings, and employment to name a few. DHDD wrote a CDC Feature about ways that communities around the country are becoming more inclusive to people with disabilities. DHDD is working with the National Association of Chronic Disease Directors (NACDD) to enable these and other inclusive community projects. Read more…

The Measure of Everyday Life Interview with Shannon Griffin-Blake

170x170bb.jpgOn July 9, The Measure of  Everyday Life radio program, a weekly interview program hosted by Brian Southwell featuring social science researchers who endeavor to improve the human condition, interviewed Dr. Shannon Griffin-Blake (NCBDD’s Disability and Health Branch). She spoke about the evolution of disability and how this has influenced the way public health sees and collects data about people with disabilities. The program included vignettes featuring several persons with disabilities. The program was be released online on Wednesday, July 12th on the Apple podcast page, named Disabilities.

The Speak for Yourself Workshop

SFY Workshop Image.jpgRSVP now for the Speak for Yourself Workshop on Friday, September 22, 2017, from 8:30 am to 4:30 pm at the National Youth Transitions Center in Washington, DC!

This free workshop is a part of United Cerebral Palsy’s “Speak for Yourself” initiative, aimed at educating health professionals and researchers on the needs and desires of people with disabilities, and to actively engage people with disabilities on advocating for their own needs and desires when it comes to their health and health experiences.

Policy and Program professionals, self-advocates, and anyone interested in learning more is invited to attend! Breakfast and lunch will be provided. ASL and CART will be provided on site. Read more…

Early Hearing Detection and Vocabulary of Children with Hearing Loss

ehdi-136-500px-smallWhile hearing loss can affect a child’s ability to develop language and words, a study recently published in the journal, Pediatrics, entitled “Early Hearing Detection and Vocabulary of Children with Hearing Loss,” found that early diagnosis and intervention for children with hearing loss can help them develop these communication skills. Children with hearing loss included in this study who were identified and received appropriate help early were more likely to have a much larger vocabulary than children who do not meet the Early Hearing Detection Intervention (EHDI) 1-3-6 guidelines. Winnie Chung of DHDD’s EHDI team is a co-author. Read more here.

CDC Public Health Grand Rounds: Addressing Health Disparities in Early Childhood

1280px-US_CDC_logo.svgNCBDDD’s Division of Human Development and Disability wrote a summary of the CDC Public Health Grand Rounds presentation in 2016 on addressing health disparities in early childhood for the July 27th MMWR. Exposure to adversity and stressors such as poverty, lack of safety and stability in the home environment, and lack of access to quality early education can negatively impact a child’s development. These problems can have lifetime effects on learning, health, and earnings; however, responsive parenting and supportive community and health care environments for children early in life, can optimize health and development. To support healthy child development, it is important to identify and treat problems early, address the needs of parents and caregivers, and work with families across settings and over time. DHDD supports collaboration between health care, early child care, early intervention programs, and social services in order to prevent the development of diseases and disorders among at-risk and vulnerable children.

Health and Disability 101: Training for Health Department Employees

naccho-logoNACCHO’s Health and Disability Program is proud to announce a new online e-learning module titled, “Health and Disability 101: Training for Health Department Employees.” The purpose of this training is to educate health department staff about the benefits of including people with disabilities in all public health programs, products and services. To access this free training, click here

This course can be accessed through NACCHO University, NACCHO’s learning management platform. In order to view the course, you will need to create a MyNACCHO account by clicking the “sign in” button on the top right. Follow the prompts to create a new account and you will be re-directed back to the NACCHO University homepage. When signed-in, you can access your account by clicking on your name on the top right.

News from NCBDDD
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 9/10/2017. 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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