October 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
Dear Friends of NCBDDD,

Happy fall! We hope you’re enjoying the cooler weather and getting geared up for Halloween.

As we head into the final months of 2017, the Executive Committee is preparing for the year ahead. Most importantly, we are now accepting nominations for the Friends of NCBDDD Executive Committee. We hope you’ll consider serving! The Executive Committee is a fantastic way to make new connections, enhance relationships with NCBDDD staff, and advance the work of the Friends. Additional information can be found below. The deadline for nominations has been extended to next Friday, October 27th at COB.

In other news, we had a wonderful quarterly webinar in September. A big thanks for all who were able to join. If you missed it, be sure to check-out the recorded session (details below). The Executive Committee is also working with NCBDDD to gather partner spotlight stories for the Center’s soon-to-be-released 2017 annual report. This is a great opportunity to showcase the impactful work of your organization. You can learn more about submitting a storying below.

Finally, be on the lookout in the near future for a save-the-date for our winter in-person meeting. Hint: we’re aiming for February and it’s going to be a great event!

Please reach out with any questions or suggestions. I always appreciate hearing from you.

Becky Abbott
Chair, Friends of NCBDDD

Elections are underway!!

Nominate yourself or a colleague to serve on the Friends of NCBDDD Executive Committee! The Friends of NCBDDD is accepting nominations to serve on the Executive Committee. We are seeking six new officers – a membership chair, a secretary, a communications chair, and three members-at-large. This is a two year commitment (2018-2019) that requires anywhere from two to six hours per month depending on the position. You will find a nomination form here, which outlines the requirements for each position and details how you can nominate yourself or a colleague you think would be a great addition to the leadership of the Friends. {Deadline Extended} We’ll be accepting nominations through October 27. . Download Nomination Form

Now Archived: Friends of NCBDDD Quarterly Check-in

The Friends of NCBDDD quarterly webinar will featured  an update on NCBDDD activities , a recap of recent Executive Committee actions, and a summary of ongoing efforts by the Advocacy Coalition. In recognition of National Sickle Cell Awareness Month, we’ll also heard from NCBDDD staff, organizational partners and our Protecting People Family Liaison on how NCBDDD is working to improve health outcomes for people with sickle cell disease. View recording here.


Seeking Spotlight Stories for the NCBDDD FY17 Annual Report

NCBDDD would like to highlight your organization in their 2017 annual report and share the important difference you’re making for the constituencies you serve. In 300 words or less, please tell us: (1) why your organization believes this work is important, (2) about any special projects you are currently working on, (3) how your work has positively impacted a real person or family, and (4) how NCBDDD has helped to fund/facilitate the project highlighted in your spotlight story. Each spotlight story should speak to one of the NCBDDD Thematic Areas – Saving Babies, Helping Children, Protecting People, or Improving Health. To see examples of last year’s stories, click on the link for each Thematic Area and scroll to the bottom. Submit your document to rabbott@marchofdimes.org for consideration no later than Friday, November 3rd. 


Saving Babies
Public Health Grand Rounds: Global Prevention of Neural Tube Defects

On October 17, CDC’s Public Health Grand Rounds featured NCBDDD scientists and researchers in a session titled “Global Prevention of Neural Tube Defects.” The informative session featured experts discussing how fortifying grains with folic acid could prevent neural tube defects, a significant cause of death and lifelong disability worldwide. In the coming days, a recording of the session will be posted here. Be sure to check it out!


Protecting People background imageProtecting People
Managing Venous Thromboembolism in the Emergency Department

Managing Venous Thromboembolism in the Emergency Department.pngNovember 9, 2017, 2:00 p.m. – 3:00 p.m. ET

According to the Agency for Healthcare Research and Quality, about 200,000 people in the United States are diagnosed with new or recurrent pulmonary embolism (PE) each year, and over half of these diagnoses are made in an emergency department (ED). For this reason, ED providers have a high index of suspicion for PE, and frequently test for a PE diagnosis. However, many patients continue to have delayed or missed diagnosis of this potentially fatal medical condition. For patients diagnosed with PE, ED providers can choose from new treatment options, depending on the patient’s level of risk for death. For low risk patients, single drug anticoagulation and immediate home treatment may be appropriate. For more severe cases, team-based management, including systemic and catheter-directed fibrinolysis, may be necessary. Event Flyer / Register



helpingChildren@2x_bacgroundHelping Children
Information from Child Neurology Foundation

chilldrenneurologyWho is CNF? The Child Neurology Foundation connects and collaborates with patients, families, physicians, health care providers, advocacy organizations, and industry partners–all of whom work together to help improve the lives of children with neurologic disorders and their families. To receive information from CNF, click here.

Transition of Care Program. Each patient transitioning from a child neurologist to an adult neurologist will have unique experiences and needs. CNF’s Transition of Care Program—its largest and most diverse program—has resources for providers and families: videos (NEW!) with perspectives about transition from families, youth, and national neurology experts; downloadable forms including self-assessments, plans of care, medical summaries, transfer letter samples; comic books; published consensus statement and more.

Infantile Spasms (IS) Awareness. CNF is committed to awareness and education specific to infantile spasms (IS). IS efforts are showcased during Infantile Spasms Awareness Week (ISAW), held annually, December 1-7. These efforts are led by a collaborative advocacy model of over 20 national and international entities, dubbed the Infantile Spasms Action Network (ISAN). ISAN is finalizing a mnemonic, to be introduced during ISAW 2017, that will increase awareness and understanding of IS among families, clinicians, and the public. Learn More

Family Support and Empowerment Program (FSEP). The CNF Family Support and Empowerment Program (FSEP) offers families a direct connection with an experienced Peer Support Specialist to help navigate disease diagnosis, treatment, and management for a child living with a neurologic condition. Along with relational support, Peer Support Specialists seek to empower families by sharing helpful resources. For health care providers, think of FSEP as a partner in achieving family-centered care and as a trusted resource and offer FSEP support services to your patients and families.  

Sudden Unexpected Death in Epilepsy (SUDEP). Each year, CNF selects a topic as its primary education focus. SUDEP was selected for 2017 and a variety of SUDEP educational activities are completed or in development with focus on improving communication between the child neurology team and patients/families when discussing difficult information. Most recently, the CNF symposium on SUDEP was presented on October 8th to a sold-out crowd. Resources on communication styles and seizure alert devices were also debuted at the symposium. Learn more

Respite Care Notebook. Released in September, the CNF Respite Care Notebook–a communication tool for caregivers to use with respite care providers—includes medical and condition-specific information, but with a “person-first” feel – leading with the child’s strengths, likes and dislikes. The Notebook is now available online with customizable, fillable forms to download.

Questions? Contact Stephanie Mucha, MPH; CNF Director, Collaborative Programs & Initiatives smucha@childneurologyfoundation.org

ADHD Awareness Month! Get in the Know!

adhdRead the NRC’s ADHD Weekly article, It’s ADHD Awareness Month! Get in the Know!, to find out what CHADD/NRC and our partners—Attention Deficit Disorder Association (ADDA) and ADHD Coaches Organization (ACO)—are doing to raise awareness about ADHD.  The article also provides several ideas on what the public can do to promote awareness locally.  An accompanying article, Were You Aware?, discusses the stigma regarding ADHD that has generated myths and misunderstandings, and ways to combat the problem.

Apps for ADHD

milstonetrackerWhich apps for your smartphone are most useful in helping to manage ADHD symptoms?Check out the NRC’s new slide show featuring apps targeting executive function challenges—self-monitoring, self-regulation, activating for tasks, organizing, prioritizing, focusing, and sustaining attention, and an alarm clock that helps waking up easier. Links to additional resources including a webinar discussing helpful apps can be found below the slide show.


Local Invitation to AUCD 2017 Plenary Sessions

The AUCD 2017 Conference will take place in Washington, DC, from November 5 to November 8. AUCD is graciously extending an invitation to local friends, organizational partners, students, and invited guests to attend any of their three conference plenaries for free. This registration does not include access to other conference events such as concurrent or poster sessions, or refreshments. Don’t delay, registration closes today, October 20. registration information


Improving Health No BackgroundImproving Health
ACHA  Webinars

achaLearn more about specific CHD conditions and defects, and the issues that affect your life. Participate in our monthly Webinars. Our leading experts and advocates cover a range of interesting, diverse and timely topics in patient-friendly language. Read more…


ACHA Regional Conferences

ArterialSwitchFlyer2016 NewLogoIn conjunction with adult congenital heart disease (ACHD) medical programs and providers, ACHA organizes and facilitates patient education regional conferences nationwide. The objectives are to help adults with congenital heart disease (CHD) and their family members better understand their disease, take an active role in their cardiac care, and connect with their peers and with ACHD medical programs around the county.
Read more…


fitnessOn October 25, Division of Human Development and Disability will host a FIT4ALL-FIT4Life event here at CDC for colleagues to network and learn more about disability inclusion for physical activity programs. Several Paralympic and Special Olympics athletes will visit CDC to talk about their experiences in recent competitions, share their perspectives on disability inclusion, and discuss how physical activity can help everybody stay active, healthy, and succeed in other areas of life. After the panel, attendees will be able to meet the athletes and can participate in an inclusive workout with them!

NCBDDD Partnership Forum Featuring the National Center on Health, Physical Activity and Disability (NCHPAD)

On October 26, NCBDDD will host its quarterly Partnership Forum at CDC featuring guest speakers from NCHPAD. Presentations will include an overview of NCHPAD work, ongoing joint projects, and shared future goals to ensure the health and inclusion of people with disabilities in all environments. The program will begin at 11:00a and CDC has provided a dial-in number. Event Flyer 

Guide to Community Preventive Services and Disability Inclusion

Built-Environment-bikesOne in five adults in the United States have some type of disability. This population experiences many health disparities compared to adults without disabilities. The American Journal of Preventive Medicine (AJPM) published a report that summarized how public health recommendations in the Guide to Community Preventive Services can be adapted to ensure that people with disabilities have the opportunity to benefit from them. As community organizations and public health officials implement these recommendations, it is important to remove the health barriers people with disabilities endure so that public health care reaches everyone.

News from NCBDDD
Guide to Community Preventive Services and Disability Inclusion

NCBDDD Partner Alerts have transitioned to GovDelivery, an electronic communication technology that provides its services to over 1,800 government organizations in Europe and in the United States. By using GovDelivery to distribute NCBDDD Partner Alerts, NCBDDD will use the platform in an effort to better engage with you, our valued partners, as well as keep you well informed on Center activities. 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 http://www.cdc.gov/ncbddd/connect/index.html 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 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 11/10/2017. Photos and web links are encouraged!!


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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