January 2017

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News from NCBDDD Executive Committee

Saving Babies

Helping Children

Protecting People

Improving Health

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News from NCBDDD Executive Committee
Executive Committee Members-Welcome and Thanks

Our newly elected 2017 Executive Committee members and our 2016 Executive Committee members who are rotating off were recognized at the Friends of NCBDDD In-Person meeting last week! We look forward to working with everyone in the New Year!

Read more | Full Executive Committee Roster

Communications Committee Listserv ReminderCommunications Committee Listserv Reminder

Did you know that if you are a member of the Friends of NCBDDD that you can use the listserv to disseminate information to the group? Our listserv address is: FriendsNCBDDD@lyrisvs.aucd.org. If you have an urgent request for the group, or want to share important information, feel free to use the listserv.

Saving Babies
National Health Care Coalition Preparedness conference

conferenceMembers of the Children’s Preparedness Unit attended the National Health Care Coalition Preparedness conference in Washington DC, December 12-14th. Team lead Eric Dziuban presented the Outbreaks and Children portion of a group presentation titled “Emerging Infectious Disease Outbreaks: Improving Pediatric Preparedness and Addressing Children’s Needs.”

 
Protecting People background imageProtecting People
The Friends of NCBDDD Welcome a New NCBDDD Family Liaison

courtney-stinnettThe Friends of NCBDDD welcome Courtney Stinnett as a Family Liaison in the area of Protecting People and Preventing Complications of Blood Disorders. Courtney currently lives in Indianapolis, Indiana.  Courtney is knowledgeable and passionate about her thematic area. Courtney lives with Sickle Cell Disease and helps her teenage son battle his medical condition of Beta Thalassemia Intermedia.  She is also the Indiana patient representative for STORM (Sickle Treatment and Outcomes Research in the Midwest).  Courtney also happens to be a published author and her book “Big Sister Older Brother” is a true story. You may find the book which is based on the life of Courtney and her brother on amazon.com. 

Evidence-Based Guidelines in Hemophilia Care: A Model for Rare Disease Guidelines

db8cbefa0f64b7ddbe720d88aff62702Thursday, February 16, 2017, 2:00 p.m. – 3:00 p.m. ET

The optimal care delivery model for people with hemophilia is integrated care. This approach requires a high degree of collaboration and communication by all healthcare team members to establish a comprehensive treatment plan, and is supported by a number of national and international guidance documents. However, the effects of integrated care on patient outcomes have not been studied thoroughly. The National Hemophilia Foundation (NHF) initiated the development of an evidence-based clinical practice guideline to identify best practices in delivery of care for people with hemophilia in order to improve patient outcomes. In this webinar, presenters will describe the research that formed the basis for the guideline, and how the guideline will be put into action Register Event Flyer

Disability Inclusion in the Workplace

cdcPeople with disabilities in America are twice as likely to be unemployed than people without disabilities – a fact that can be eliminated. Dr. Shannon Griffin-Blake tells us how we can give people with disabilities an opportunity to thrive in the workforce. Created: 12/28/2016 by National Center on Birth Defects and Developmental Disabilities (NCBDDD). Date Released: 12/28/2016. Series Name: CDC Featured Podcasts.
Read more…

helpingChildren@2x_bacgroundHelping Children

Early Hearing Detection and Intervention

earlyhearingOn December 15th, 2016, Xidong Deng of the EHDI (Early Hearing Detection and Intervention) program presented on the webinar “EHDI electronic Clinical Quality Measure (eCQM): Hearing Screening Prior to Hospital Discharge (EHDI-1a),” part of the Joint Commission’s Pioneers in Quality: Expert to Expert webinar series. The session began with a review of the measure logic and value sets, followed by a discussion of common questions and issues.
Learn ore information about the Pioneers in Quality webinar series.

New Early Hearing Detection and Intervention Funding Opportunity Announcement (FOA)

A new EHDI FOA has been posted. It will support the identification and implementation of approaches to strengthen the program’s capacity to capture complete and accurate data on all infants in need of recommended follow-up diagnostic and intervention services. The timely receipt of these follow-up services is essential to ensuring the early identification of deaf and hard of hearing infants to avoid delays in the acquisition of essential communication and language skills that will last a lifetime. Find more information here.

Webinar on Tourette Syndrome and ADHD

tourettesChildren and Adults with ADHD (CHADD) and the Tourette Association of America (TAA) are offering a free webinar, “Tourette Syndrome and ADHD: Starting a New Year with Health, School and Home supports.” A panel of experts will offer tips to help parents of children affected by ADHD and Tourette Syndrome start the New Year in the best possible way. You will hear about the top five things to ask or talk to your doctor about, specific issues to discuss with your child’s school, and ways to support your child at home.

The panelists will answer participant submitted questions during the webinar. For more information and to register visit.

Ask the Expert webcasts on ADHD now available as podcasts

adhdOur Ask the Expert webcasts are now available as podcasts on iTunes and Soundcloud. Ask the Expert is a webcast series hosted by CHADD’s National Resource Center on ADHD. These webcasts give the ADHD community access to top clinicians, researchers, and other ADHD professionals on a variety of topics. If you’re an auditory learner or have a long commute then this is a great way to listen to our experts without needing to be in front of a screen. Like what you hear? Make sure you subscribe and rate us, so we can bring you more of the latest science‐based information. Download and listen to the podcasts.

CHADD’s Online Community:  Attention Connection

chaddAre you seeking an online commuatnity to help you deal with the challenges of living with ADHD?  You can get help through CHADD’s Attention Connection [http://www.chadd.org/QA.aspx ], a free resource where participants can post questions, connect with others, and seek answers from our community of individuals directly affected by ADHD.  NRC Health Information Specialists are also on hand to provide clarification, evidence-based information, and further insights.  We look forward to connecting with you!

The National Resource Center on ADHD celebrates a year of ADHD Weekly e-newsletter

signWe just celebrated one year of bringing timely and useful information on ADHD to our communities through our e-newsletter, ADHD Weekly. Over the past year, we have highlighted the science and lived experience of ADHD each week. Subscribe to ADHD Weekly e-newsletter.

Improving Health No BackgroundImproving Health
Join UCP for the next installment of the “Speak for Yourself” series, “What Matters to You?: A Guide to Understanding Patient-Centered Research for People with Disabilities.”

mlwl-logoJanuary 18, 2017 at 2:00 PM EST.

This webinar will explore how people with disabilities can advocate for their own health needs in a way that centers the focus on what is important to the individual. Covering a variety of topics to help you navigate the sometimes tricky world of health care, topics covered will include: steps to being a self-advocate and advocating for your health needs, building a support network, and a look at the health and disability experience. This webinar will give participants the tools they need to put those steps into action to make their voices heard in a medical and/or research setting.

The webinar is free, and will be available online. Closed Captioning will be provided and a transcript will be made available. Please note this webinar is opened to people of all levels of ability, as well as families, allies and support networks. Please click here for more information.” 

 
Including People with Disabilities: Public Health Workforce Competencies

webinar-thumb

Tuesday, January 24, 2017, 3:00 p.m. 4:00 p.m. ET

One in five Americans-over 54 million-have a disability, yet many public health programs do not include them in their program design. People with disabilities are more likely to experience chronic conditions such as asthma, diabetes and heart disease as compared to people without disabilities. There is a clear need for public health efforts to reduce health disparities among people with disabilities. The Including People with Disabilities: Public Health Workforce Competencies were created for the public health workforce to provide basic knowledge on the relationship between disability and public health programs, and increase the capacity of public health practitioners to include people with disabilities in their public health efforts. The presentation will provide an overview of the Competencies and examples for implementation from AUCD. The Arc HealthMeet team will also present on how the material has been adapted to educate public health professionals about adults with ID and how to include them in planning and health promotion. A Webinar from AUCD’s Public Health Team and The ARC HealthMeet®. Register here.

Rare Disorders Interview Now Online

rare-diseaseRodolfo Valdez, an epidemiologist on the Rare Disorders and Health Outcomes team, conducted an interview with a rare disease blogger. The interview is now available online. Read the interview here.

 
News from NCBDDD
Best wishes to Dr. Nancy Cheal!

dr-nancy-chealNancy Cheal, PhD, RN, retired in December 2016 after over 26 years with CDC and 37 years of federal service. Nancy has held leadership positions in many organizations across CDC.

Since 2012, Nancy served as the lead of the Fetal Alcohol Syndrome (FAS) Prevention Team in NCBDDD. She came to shepherd the FAS Prevention Team through a time of significant changes. Under her leadership, the team conducted an external peer review, which resulted in a dramatic shift of program direction and partnerships. Before coming to the FAS team, Nancy was NCBDDD’s associate director for Program Development (2009 – 2012), where she was responsible for a wide variety of planning and performance initiatives and projects. From 2005 – 2009, she served as organizational effectiveness officer for the Coordinating Center for Health Promotion, where she identified and analyzed issues and their impact on public health policies.

Nancy worked in CDC’s Office of the Director, Office of Program Planning and Evaluation from 1994 – 2005. For most of this period, she served as CDC’s associate director for evaluation. She began her CDC career in 1990 in the Division of Cancer Prevention and Control, and has held various nursing positions with hospitals in the Atlanta area, and in the United States Army in South Korea, Germany, and Walter Reed Hospital.

Nancy received a doctorate in education from Georgia State University and bachelor’s in nursing from the University of Texas Health Sciences Center.

Social Media Corner
  • National Birth Defects Prevention Month
    January is National Birth Defects Prevention Month. Join us in this nationwide effort to raise awareness of birth defects, their causes, and their impact. Help us spread the word on social media!
     
  • Sign up for the #Prevent2Protect Thunderclap
    Any time before Noon ET January 18, 2017, sign up for the #Prevent2Protect Thunderclap, which allows supporters to share a unified message at a specific time via Facebook, Twitter, or Tumblr.
     
  • Create a buzz about birth defects on social media
    Create an original picture or video and post on social media tagged with #Prevent2Protect.

    • #Prevent2Protect will mark messages sharing tips for how women can reduce their risk of getting an infection during pregnancy.
Join a Twitter chat
  • Topic: Birth Defects Prevention Month: What Latinas Need to Know
    Description: Participants will discuss facts about folic acid and other healthy pregnancy tips.
    Date: Tuesday, January 10, 2017
    Time: 1PM ET
    Host: SaludToday
    To join: Use the hashtag #SaludTues to join.
     
  • Topic: Zika
    Description: Zika is still a problem for moms and babies. Learn the latest info in this #ZAPzika chat.
    Date: Thursday, January 26, 2017
    Time: 1PM ET
    Host: March of Dimes, Mother to Baby
    To join: Use the hashtag #ZAPzika to join.
  • *Stay tuned for more, upcoming Twitter chats.
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Submit Here
News items may be submitted for consideration via email to acostalas@aucd.org. Send in 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 2/10/2017. 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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