Greetings from the Friends of NCBDDD
Member and Communications Chair
 Dear Friends,
Sign up to join our Friends of NCBDDD Communications Committee! We’re interested in communication professionals and other interested staffers from the Friends member organizations to join us. Our goal is to find more effective messages and new strategies to communicate the value of belonging to the Friends of NCBDDD and the value of the work of NCBDDD. For more information, please contact me at syates@naccho.org.
Sarah Yates, JD
Member and Communications Chair
Parent Corner
As an adoptive parent of children with emotional and behavioral challenges, I have experienced how disjointed and fragmented our service system is. The mental health system is by itself fragmented and complicated, but in addition, the mental health system is also very separate from the physical health care system which makes matters worse when attempting to coordinate care. I would often think what a wonderful thing it would be if the systems could work together! For the last several years we have been working to develop integrated care systems that can provide families who have children with emotional and behavioral health challenges, the needed support and coordination of care that is necessary to enable our kids to meet their optimal potential. We now have an exciting new program in Iowa to do just that! As the Executive Director of the Center for Child Health Improvement and Innovation, at the University of Iowa, we are providing technical assistance, practice transformation coaching, training and data analysis for this new community based program that will help improve outcomes for up to 16,000 of Iowa’s children.
Read more…
Julie Beckett
News from NCBDDD
Treating for Two: Safer Medication Use in Pregnancy
NCBDDD has developed three Strategic Health Investments (SHI) that have the potential to expand the Center’s work and have significant public health impacts. The first SHI to be introduced in the Friends’ Newsletter is Treating for Two. In future issues of the Friends’ Newsletter we will introduce our other SHI.
Read more…
A Downloadable Slideshow on Risk Factors, Signs, and Symptoms of Deep Vein Thrombosis (DVT)
 Blood clots can be a serious health condition and everyone can find themselves at risk at some point in life. It is important to recognize the signs, symptoms, and risk factors for deep vein thrombosis (DVT) and a complication of DVT called a pulmonary embolism (PE). DVT is a condition that occurs when a blood clot forms in one of the deep veins of the body, and a PE occurs when part of the blood clot breaks off and travels through the lung, blocking blood that flows through an artery. A PE can be fatal.
Although anyone can develop DVT and PE, factors such as immobility, cancer and surgery may increase your risk for developing a blood clot.
To help increase awareness of DVT and PE, the Division of Blood Disorders, CDC, developed a downloadable slideshow, called a widget. This narrated slideshow describes the risk factors for these conditions, signs and symptoms, and tips for prevention. You will also receive information on what to do if you suspect you have a blood clot.
Read more…
Webinar Series on Bleeding and Clotting Disorders
The Division of Blood Disorders (DBD) is proud to offer its “Webinar Series on Bleeding and Clotting Disorders.” This new webinar series provides evidence-based information on new research, interventions and emerging issues of interest in blood disorders, as well as innovative approaches in collaborations and partnerships. The next webinar in the series, “Inhibitor Testing: State of the Art,” is scheduled for June 5, 2014 from 2:00-3:00 pm EDT. Connie Miller, PhD, will be the guest presenter. To participate, log on to view the content (https://www323.livemeeting.com/cc/cdc/join?id=76KHDJ&role=attend; ID:76KHDJ) and dial in to hear the audio (1-866-692-4541).
Do You Know About Thalassemia?
 Thalassemia is a serious condition that can lead to organ damage and even death. View CDC.gov’s feature in recognition of International Thalassemia Day on May 8th to find out more about related health problems, treatment, CDC’s work, and what you can do to make a difference.
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62nd Annual CDC & ATSDR Annual Honor Awards Ceremony
Please join NCBDDD in congratulating its awardees for the 2013 CDC/ATSDR Honor Awards. NCBDDD is so proud of all awardees and nominees, all of whom were honored during the awards ceremony on Tuesday, May 13.
Read more…
Do You Know How to Protect Babies From Life Threatening Bleeding?
Learn how to protect babies from life threatening bleeding by visiting CDC’s new website on Vitamin K Deficiency Bleeding. The site has been developed to include information on facts about Vitamin K deficiency bleeding, commonly asked questions and answers, recently published articles, podcasts and other multimedia tools, fact sheets and other free materials for download and printing, stories from families and links to other organizations.
News from our Partners
News From TSA
TSA Produces New Video
National Tourette Syndrome Association (TSA) has produced, “STAND UP for TOURETTE SYNDROME,” a new video that informs elementary school children about Tourette Syndrome. The film also models peer-leadership in schools and shows kids how to respond positively when they encounter teasing and bullying. Please take a moment to view this brief, helpful video and share it widely with educators, clinicians, administrators, and families. “STAND UP for TOURETTE SYNDROME” can be viewed here.
Tourette Syndrome Awareness Month
Tourette Syndrome Awareness Month is May 15-Jun 15!  Dozens of awareness events are planned across the country. TSA national chapters will be holding awareness-building walks and other events including Tourette Syndrome events at regional minor league baseball parks, family fun days, basketball tourneys, as well as public education programs. TEAM TSA will be holding marathon running events as well. The National TSA Awareness Walk will be held on Sunday, June 8 in Flushing Meadows, New York City. The entire organization is promoting TS/TSA pride during the month, with a “TEAL TUESDAYS” campaign. Everyone is encouraged to wear teal (the national TSA color) to promote awareness!
NACCHO Releases Research Brief
 Local health departments play an important role in local systems that serve children, both as direct service providers and as coordinating agencies. The National Association of County and City Health Officials (NACCHO) released “Conversations with Local Health Departments: Parenting Education and Skills-Building Program Implementation Capacity” in April 2014. This research brief explores local health departments’ capacity to support and implement parenting education and skills-building programs. It is available for free at http://eweb.naccho.org/prd/?na581PDF.
Fostering Partnerships and Teamwork in the Pediatric Medical Home: A How To Webinar Series
The National Center for Medical Home Implementation (NCMHI) recently hosted a three part webinar series examining three important facets of pediatric medical home implementation: team huddles, care partnership support, and family advisory groups. View these comprehensive “How-To” webinars on the NCMHI Web site and YouTube page, along with detailed speakers notes, powerpoint slides, and answered audience questions.
New Resources Focus on Children and Youth with Special Health Care Needs
 The Maternal and Child Health Library at Georgetown University, with support from the Health Resources and Services Administration’s Maternal and Child Health Bureau, released a new knowledge path and set of resource briefs about children and youth with special health care needs. The knowledge path includes tools for health care practices; training; improving state systems and services; research; and finding data and statistics, journal articles, reports, and other materials. The knowledge path aims to help health professionals, program administrators, policymakers, and researchers learn more about children and youth with special health care needs and their families, to integrate what they know into their work in new ways to improve care, for program development, and to locate training resources and information to answer specific questions. Companion resource briefs are also available, including briefs on resources for families and resources for schools.
Genetics in Primary Care Education On Demand
 Learn about genetics in primary on your schedule with the archived webinar series from the Genetics in Primary Care Institute. Watch archived webinars, view presentation slides, and check out the NEW fact sheets for an easy-to-read version of information from the webinars. Topics include family history, genetic testing, genetic counseling, and more.
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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 Tory Christensen
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