April 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,

Your colleagues on the Executive Committee hope you’re having a wonderful April! This month’s newsletter includes a number of exciting updates for the Friends. Be sure to check them out.

It’s been a busy month for the Friends of NCBDDD Advocacy Coalition, including a number of meetings with lawmakers in DC. Check out the update below for information on how to get additional details about advocacy coalition activities.

Finally, due to a scheduling conflict, we have cancelled our April quarterly call. We’ll be in touch with additional information regarding opportunities to engage with the Friends.

Thanks for being a friend to NCBDDD. 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
Prematurity Prevention Summit: Building a Birth Equity Movement

March of Dimes is convening the Prematurity Prevention Summit: Building a Birth Equity Movement on May 21 and 22, 2018, in Arlington, Virginia, with support from the Centers for Disease Control and the Kellogg Foundation. Thought leaders will convene at the summit to:

  • advance policy and practice,
  • mobilize community leadership,
  • share and spread emerging ideas and promising practices, and
  • energize stakeholder to achieve equity and reduce preterm birth.

Additional details here. You can register for the summit here.

 

Protecting People background imageProtecting People
Measure What Matters: Advancing Multidisciplinary Care Coordination in Primary and Subspecialty Care Settings

s_hdr_img_4801923001176659670Part 1: May 10, 2018, Noon –  12:45 pm ET Register
Part 2: May 17, 2018, Noon – 12:45 pm ET Register

This 2-part webinar series will present real-world experiences from diverse health care providers with the common goal of capturing the value of care coordination using the Care Coordination Measurement Tool (CCMT)*. Webinar faculty will describe their objectives for measuring care coordination, experiences in implementing the tool, and the implications of capturing the value of care coordination. Read more…

helpingChildren@2x_bacgroundHelping Children
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 http://www.chadd.org/YoungScientist.aspx 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 the Awards.

 

Assessment of co-occurring conditions/symptoms may provide opportunity for early identification of children with autism

coverThe Journal of Autism and Developmental Disorders has published a new article, Prevalence of co-occurring medical and behavioral conditions/symptoms among 4- and 8-year-old children with autism spectrum disorder in selected areas of the United States in 2010, using data from the Autism and Developmental Disabilities Monitoring (ADDM) Network. 

In this study, researchers compared the number of 4-year-old and 8-year-old children with autism spectrum disorder (ASD) who have one or more co-occurring conditions or symptoms along with ASD. The presence of co-occurring conditions or symptoms in children with ASD can make it difficult for some of these children to get a timely diagnosis of ASD, possibly resulting in delayed access to services. On the other hand, the presence of co-occurring conditions or symptoms can also make parents more likely to consult healthcare providers, possibly leading to early identification of ASD. Read more...

Statewide Parent Advocacy Network (SPAN) Celebrates 30 years! 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 NJ — 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.

 

Improving Health No BackgroundImproving Health

 

Coping with Grief: Loss of a Loved One

ACHATuesday, April 24, 2018, 7:00 p.m. – 8:00 p.m. ET

Have you experienced the loss of a loved one or friend as the result of CHD or other causes? Do you know that grief is a normal and natural reaction to this loss? Do you know the difference between normal and complicated grief? This webinar will cover the basic knowledge of the grieving process, myths about the grief timeline, healthy coping strategies, when to seek professional help, and resources for continued self-help. Register today. You won’t want to miss this important webinar. Register / Flyer

Imaging Techniques in ACHD: What’s New?

ACHAWednesday, May 9, 2018, 7:00 p.m. – 8:00 p.m. ET

Did you know that regular follow up for adults with congenital heart disease (ACHD) helps guide treatment and monitor for complications? Are you aware that imaging techniques are a part of that follow up? Imaging allows doctors to look inside your heart to understand the structure and function. Did you know that as an ACHD patient, one or more different imaging techniques might be used? Each method has unique benefits and limitations. Dr. David Gregg, ACHD cardiologist, will discuss the different ACHD imaging techniques, the questions they may help answer, and their limitations. You don’t want to miss this webinar. Register today.
Register / Flyer

 

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.

 

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
  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 5/10/2018. 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.