November 2014

In this Issue

Greetings from
the NCBDDD Director

News from NCBDDD

Election Results are in!

Hemophilia: Martial Arts Videos

January is National Birth Defects Prevention Month

New guidelines published for limb-girdle and distal muscular dystrophy

CDC Awards the National Blood Clot Alliance Funding to Expand Public Awareness About the Risks and Impact of Blood Clots

Accreditation Renewed for Online Curriculum: “Stop the ClotTM: What Every Healthcare Professional Should Know”

Team Stop The Clot takes on the NYC Marathon!

News from our Partners

Chattanooga Times Free Press: Orange Grove Center debuts a unique new feature for the disabled

National Disability Navigator Resource Collaborative (NDNRC) Receives Year 2 Funding and Will Focus on community Outreach

Conferences

2014 TASH Conference – Be the Future
December 3, 2014
Washington, DC

2015 AMCHP Conference: United to Build Healthier Communities
January 24-27, 2015
Washington, DC

Save the Date! 11th International HHT Scientific Conference
June 10-14, 2014
Washington, DC

Webinars

Bleeding Consideration in Women of Reproductive Age
January 22, 2015

ACHA Webinar Archive: Living with Congenitally Corrected Transportation of the Great Arteries

Calling for News from
NCBDDD Partners

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 12/8/2014.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen
Chair (twitter.com/adrianegriffen)
Craig Mason
Vice Chair
Sarah Yates
Membership/Communications
Patrick Johnson
Secretary
Mary Andrus
Member at Large
Angela Blackwell
Member at Large
Jeff Cohen
Member at Large
Barbara Kornblau
Member at Large
Sara Struwe
Member at Large
Emil Wigode,
Advocacy Coalition Liaison
Annie Acosta,
Advocacy Coalition
Co-Chair
Roberta Carlin,
Past Chair

*Read the minutes of
the monthly Executive
Committee Calls here!

NCBDDD’s Social
Media Corner

Follow NCBDDD on Twitter:

As you many know by now NCBDDD has streamlined its Twitter strategy from five handles to one: At this time we would like to encourage all of you
to include our new NCBDDD Connect badge to your signature block. It is a
great way to increase the visibility of NCBDDD social media presence
among our audiences—and hopefully it will result in continued increases in
followers and engagement. The more followers NCBDDD has, the more potential exposure to the topic areas.

Add NCBDDD Connect
Badge to E-mail Signature:

NCBDDD Connect Badge
Add the “Connect with NCBDDD”
button to an e-mail signature
by following the steps below:

  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. Be sure that the URL
    below is listed in the
    URL box and hit OK
    http://www.cdc.gov/ncbddd
    /connect/index.html

Greetings from NCBDDD Director

Dear Friends,

Happy Thanksgiving, Friends! At this time of year, I can’t help but reflect on what we’ve accomplished together this year. And, it leaves me humbled and grateful. Earlier this year, we hosted our Friends Executive Committee here in Atlanta. It was a very productive meeting and both staff and partners left the meeting feeling energized and enthusiastic about the path that lay ahead for this year. The charge: anchor our work with partners around some overarching messaging. We needed something to unite us. Little did we know that, with your support, the stars would align to bring these messages to life. The ultimate outcome of the time we invested in this meeting – the launch of the Friends Champion Strategy.

Making a Difference Across the Lifespan

As a Center Director, I am challenged daily with making the case for the Center. These new messages, this new strategy, and our new champions are making us more effective at doing this, together. Thank you, Friends, for stepping up and being a part of a brand new way of carrying our messages forward.   If you missed the recent Friends end of year meeting, you really missed something special. Thanks to the work of our Executive Committee, Communication Committee, Champions and the Advocacy Coalition, we had a tremendous gathering of partners representing each of the four thematic areas. The Champs provided excellent facilitated dialogues around each of the areas, staff from the Center and Division participated as well as family representatives courtesy of Family Voices. The goals for the meeting were to develop and implement a coordinated communication plan (2015) to increase the visibility of the Center’s work; to engage the Friends group in a more concerted way in support of this plan; and, to create stronger connections among Friends and with NCBDDD staff and Friends. I believe with the leadership of our Chair, Adriane Griffen, we achieved these goals fully – and look forward to seeing the action plans that come together over the coming weeks.

We are grateful for your service – whether with the Executive Committee, the Advocacy Coalition, as Champions or as members of the Friends. And, we’re looking forward to an impactful 2015!

You are invited to view photo album: NCBDDD – Partner Meeting – November 12, 2014
Sincerely,

 

 

Coleen A. Boyle, PhD, MS(Hyg)
Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD)

News from NCBDDD

Election Results are in!

Chair:
Adriane K. Griffen, MPH, MCHES
Director of Public Health, Association of University Centers on Disabilities

Vice Chair:
Sara Struwe, MPA
President and CEO, Spina Bifida Association

Member at Large:
Philip K. Cross – Retired 2013
Assistant Director, Bureau of Environmental and Occupational Epidemiology, Center for Environmental Health, New York State Department of Health

Member at Large:
Kathy Brill, MEd, MPS
Co-Founder, Executive Director of Parent to Parent, USA

These members will be joining the current Executive Committee:

  • Patrick Johnson, Secretary, AAP
  • Sarah Yates, Member/Communication Chair, NACCHO
  • Jeff Cohen, Fragile X
  • Barbara Kornblau
  • Angela Blackwell, RTI International
  • Advocacy Co-Chairs:
    • Diane Wilkinson, MOD
    • Annie Acosta, The Arc
    • Katie Verb, HFA

Many thanks to all who ran and voted in the election!
Terms will start in January.

Hemophilia: Martial Arts Videos

Faces of Hemophilia VideoOn behalf of NCBDDD’s Division of Blood Disorders’ partnership with the Hemophilia Federation of America, CDC is pleased to announce the release of two new videos (in a series of 3) that were developed to encourage community members to consider martial arts as a form of physical activity.  Please take a look and distribute to those you think may benefit from this activity.  Check back on November 21st for the third video in this series!  Enjoy!

Read More…

January is National Birth Defects Prevention Month

National Birth Defects Prevention MonthBirth defects are common, costly and critical conditions. Did you know that, every 4 ½ minutes, a baby is born in the United States with a major birth defect, such as cleft lip or spina bifida? Each year, CDC joins many organizations to recognize January as National Birth Defects Prevention Month. This year’s theme is “Making Healthy Choices to Prevent Birth Defects – Make a PACT for Prevention.”

Read more…

New guidelines published for limb-girdle and distal muscular dystrophy

NCBDDD’s Division of Human Development and Disability (DHDD) announces publication of the first evidence-based guidelines for limb-girdle and distal muscular dystrophy.  The new guidelines, developed by the American Academy of Neurology and the American Association of Neuromuscular & Electrodiagnostic Medicine, make recommendations for treating and managing complications such as muscle symptoms, heart problems, and breathing problems.

Read More

CDC Awards the National Blood Clot Alliance Funding to Expand Public Awareness About the Risks and Impact of Blood Clots

National Blood Clot Alliance LogoThe National Blood Clot Alliance  announced that it has been awarded funding from the Centers for Disease Control and Prevention (CDC) to implement an education and awareness program aimed at improving public recognition about deadly blood clots that affect up to 900,000 Americans each year.

Read More…

Accreditation Renewed for Online Curriculum:  “Stop the ClotTM:  What Every Healthcare Professional Should Know”

The National Blood Clot Alliance announces new accreditation of the widely used web-based online curriculum titled Stop the Clot™ – What Every Healthcare Professional Should Know.    This online curriculum provides no-cost contact hours for healthcare professionals.

Read more…

Team Stop The Clot takes on the NYC Marathon!

10712726_10152505927732712_6064691319339570967_nOn Sunday, November 2, National Blood Clot Alliance’s Team Stop The Clot, had 11 runners participating in the TCS New York City Marathon.  The majority of the Team was made up of DVT/PE survivors from across the country.

Read more…

News from our Partners

Chattanooga Times Free Press: Orange Grove Center debuts a unique new feature for the disabled

110114_OrangeGroveArcade01_t618Innovative assistance for the developmentally disabled and how to get a high score on pinball are two of the things that Dr. Rick Rader knows well. “Everything you need to know in life you can learn in an arcade,” Rader said. Arcade games teach and develop motor skills, self-esteem, cooperation and persistence, just to name a few.

Read full article here…

National Disability Navigator Resource Collaborative (NDNRC) Receives Year 2 Funding and Will Focus on community Outreach

The American Association on Health and Disability (AAHD) is pleased to announce the National Disability Navigator Resource Collaborative (NDNRC) has received funding for a second year. The NDNRC is an initiative aimed at providing cross-disability information and support to Navigators and other enrollment specialists thereby ensuring people with disabilities receive accurate information when selecting, enrolling and/or reenrolling in insurance through the Affordable Care Act Marketplaces. The NDNRC website can be found at: http://www.nationaldisabilitynavigator.org/.

Read more

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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