August 2014

In this Issue

Greetings from
the Friends of
NCBDDD Chair

Parent Corner

News from NCBDDD

Dr. Georgina Peacock
Named Acting Director,
NCBDDD’s Division of
Human Disabilities
and Development

Dr. Shannon Griffin-Blake
Named New Branch
Chief for the Disability
and Health Branch

Now Live! Disability and
Health Data System
(DHDS) Tutorial Videos

Stop the Clot Forum

CDC and NCBDDD
Honor the 24th
Anniversary of the
Americans with
Disabilities Act

New 2014 Disability and
Health Data System
(DHDS) Updates

News from our Partners

New Resources for
Including People
with Disabilities

Dr. Robert L. Brent
Receives 2014
Distinguished Public
Service Award

PEHDIC Hosting New
Webinar Series on
Early Identification
of Motor Delay

Maternal and Child
Health Library History
Collection Update

ACHA Webinar on
Eisenmenger Syndrome

Conferences

Improving Data, Improving
Outcomes Conference

September 8-10
New Orleans, LA

2014 Southwest
Conference on Disability

October 7-10
Albuquerque, NM

AUCD 2014 Conference
November 9-12
Washington, DC

APHA 142nd Annual
Meeting and Exposition

November 15-19
New Orleans, LA

Webinars

CDC Public Health
Grand Rounds: Infertility

August 19, 1 pm ET

Living Well with
Eisenmenger Syndrome

August 25, 7pm ET

Patient Care if Motor Delay
is Identified – Do You Know
the “Red Flags” to Look For?

August 26, 3pm ET

FASDs: Communication,
Care Coordination and

Co-Management
August 27, 3pm ET

Funding Opportunities

Friends of NCBDDD
Family Liaison Opportunity

Deadline: August 25

CDC-RFA-DD15-1501:
CDC’s ADDM Network

Deadline: October 10

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
Melody Imoh by 9/2/2014.
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
Joe Isaacs
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

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

NCBDDD’s Social
Media Corner

What’s New for August?
In addition to breaking news,
new publications and more,
NCBDDD’s social media will
cover content from its three
divisions with the following
themes throughout the
month of August:
August 2014
Positive Parenting/Back to School
Week of August 4
Back to School/ADHD
Week of August 11
“Learn the Signs. Act Early.”
Week of August 18
Child Development
Week of August 25
Children’s Mental Health

Follow NCBDDD on Twitter:
As you many know by now
NCBDDD has streamlined
its Twitter strategy from
five handles to one:
twitter.com/CDC_NCBDDD.
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 the Friends of NCBDDD
Chair

Adriane Griffen, Chair

Dear Friends,

August means the end of the summer and the beginning of fall – one last trip to the beach, getting children back to school and getting ready for all of the meetings that we seem to have each fall!

Here are some strategies to stay on top of things (and still be able to carve out a little time for fun!):

Stay connected with social media
Follow NCBDDD on Twitter @CDC_NCBDDD. NCBDDD has streamlined its Twitter strategy from five handles to one. This will result in increases in followers and engagement. The more followers NCBDDD has, the more potential exposure there is to the topic areas that matter to all of us as Friends! You can also follow me @adrianegriffen for Friends news and public health updates.

Use your Champions to stay connected with all those meetings
Are you going to be at DaSY? How about APHA? Oh, are you presenting at the regional consortium meeting? How can you be at all of these different meetings that all happen within a few weeks of each other and stay on top of everything in your day to day work?!?! Here’s an idea – use your Champion to stay connected when life gets busy. A full list of Champions is available on the Friends home page at www.friendsofncbddd.org. Champions will be your conduit to the Friends Executive Committee and leadership of the Center, so please reach out to the Champion in your particular focus area to share any updates or ideas you may have.

Find a Friend on the listserv – you are not alone
You are receiving this e-newsletter because you are a member of a dynamic coalition of like-minded, engaged professionals and families in the areas of blood disorders, birth defects and improving the health of people with a disability across the lifespan. If you are in need of a piece of information or a resource, chances are that one of your colleagues will be able to help. Why not solicit their feedback and advice with a quick post to our Friends of NCBDDD listserv at friendsncbddd@lyrisvs.aucd.org.

Many thanks for the communications committee’s ongoing efforts to develop a streamlined approach that helps to keep you connected with each other! A subcommittee of this group is meeting later this month to make plans for an in person Friends meeting later this fall. Stay tuned for details!

Last but not least, I wanted to let you know that August is a special month as we note 30 years of CDC service from NCBDDD’s Director, Dr. Coleen Boyle.  Friends, let’s celebrate by sharing our good wishes for continued success by tweeting an update that includes the Center’s new handle (@CDC_NCBDDD).

Here’s to a happy end of summer and a productive start of the fall!

Adriane Signature

Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

Parent Corner

Julie and Katie Beckett

Roxanne Romanick is a parent with North Dakota Family Voices. Please find her inspiring story below.

Julie Beckett

Roxanne’s Story:

Two years I had something phenomenal happen to me…I had reason to remove my bike from the rafters of our garage where it had hung for at least five years without any activity. I became a bike rider again. Why that happened is an even better story…My thirteen year old daughter with Down syndrome became an independent two-wheel bike rider. Suddenly we had a physical activity that we could share and I had a very motivating reason to ride my own bike.

Elizabeth had attended a Lose the Training Wheels Bike Camp in 2005 when she was 6 years old; however she never quite got the hang of trying to ride and we never could improve her confidence enough to get her motivated and enthusiastic about riding. So the years passed and when she hit her teenage years, we decided that if we were going to get this accomplished, we’d need some help, so we started to seek out Lose the Training Wheels camps across the country.

Read more…

News from NCBDDD

Dr. Georgina Peacock Named Acting Director, NCBDDD’s Division of Human Disabilities and Development

Dr. Georgina PeacockPlease join NCBDDD in welcoming Dr. Georgina Peacock as the acting director of the Division of Human Development and Disability. Dr. Peacock will be joining the division August 24 serving in a 120 day detail while we continue our efforts to recruit and hire a permanent director.

Read more…

Dr. Shannon Griffin-Blake Named New Branch Chief for the Disability and Health Branch

Dr. Shannon Griffen BlakeDr. Shannon Griffin-Blake was recently named the new Branch Chief for the Disability and Health Branch, Division of Human Development and Disability (DHDD) at CDC’s National Center on Birth Defects and Developmental Disabilities. She will provide leadership, strategic management and operational experience to CDC’s disability and health portfolio, which includes, but is not limited, to 18 funded state programs, five national public health practice and resource centers, and disability research and epidemiology expertise.

Read more…

Now Live! Disability and Health Data System (DHDS) Tutorial Videos

CDC Division of Human Development and Disability (DHDD), in collaboration with the National Association of County & City Health Officials (NACCHO), have created four Disability and Health Data System (DHDS) tutorial videos. The tutorial videos teach users how to use the web tool to access data from the Behavioral Risk Factor Surveillance System (BRFSS) about the health of adults with disabilities. These videos also teach users about the data tool and how to use three of its features: interactive maps, customizable data tables and state profiles.  DHDS is an online interactive tool that provides instant access to state-level, disability-specific health data. Users can customize the disability and health data they view, making it easy to identify health disparities between adults with and without disabilities.

The videos are available on the Disability and Health Website: http://www.cdc.gov/ncbddd/disabilityandhealth/dhds-materials.html

Stop the Clot Forum

National Blood Clot AllianceOn August 28, 2014, the National Blood Clot Alliance will host its next “ Stop The Clot” forum in Rochester, New York. This educational forum is an interactive program that provides basic information about blood clots, signs and symptoms, risk factors, prevention and treatment. The “Stop the Clot” forums provide a venue to share up-to-date information to people whose lives are affected by blood clots and clotting disorders with experts in the field. Attendees will be better equipped to make decisions about their health, communicate with their health care providers and cope with living with blood clots and clotting disorders.

The guest speaker for this event will be Peter Kouides, MD. Dr. Kouides is the Medical & Research Director at the Mary M. Gooley Hemophilia Center, based in Rochester, New York. For more information about this event, please contact Judi Elkin at jelkin@stoptheclot.org.

CDC and NCBDDD Honor the 24th Anniversary of the Americans with Disabilities Act

July 26th marked the 24th Anniversary of the Americans with Disabilities Act of 1990 (ADA). The National Center on Birth Defects and Developmental Disabilities (NCBDDD) joined in recognizing ADA as a platform for the inclusion of people with disabilities in federal efforts related to health and health care. Inclusion of people with disabilities into mainstream health programs and services can improve the health of Americans living with disabilities across their lifespan, allowing them to reach their full potential, experience independence and contribute to their communities.

In honor of the ADA anniversary, NCBDDD’s Division of Human Development and Disability released a CDC Public Health Matters Blog, “ADA Anniversary: Including People With Disabilities in Public Health,” as well as an internal agency-wide informational posting for CDC staff titled, “The Americans with Disabilities Act: A Platform for Healthy Living.”

New 2014 Disability and Health Data System (DHDS) Updates

CDC, NCBDDD’s Division of Human Development and Disability announces new features and updates to Disability and Health Data System (DHDS), an online interactive tool that provides instant access to state-level health data about adults with disabilities. New 2014 features of the data tool include 2012 Behavioral Risk Factor Surveillance System (BRFSS) data, an interactive map for mobile devices, dual area profiles, single year indicators stratified by demographic groups, P-values on disability disparity estimates and changed indicator analysis to match current recommendations.

Visit DHDS at http://dhds.cdc.gov to view the recent 2012 data, updated DHDS Fact Sheet, updated 2014 Update Notes, and updated Health Indicator List on the health of adults with disabilities in your health program area or your state.  Please send questions to dhds@cdc.gov.

Read more…

News from our Partners

New Resources for Including People with Disabilities header_logo

The National Association of County and City Health Officials (NACCHO’s) Health and Disability Program has developed two new resources to help health departments think through the best strategies for including people with disabilities in public health programs, policies and services. People with disabilities are more likely to experience inequities in their health status when compared to people without disabilities and they are less likely to be included in emergency preparedness planning. Log in to NACCHO’s Bookstore to download free guides: “Strategies for Successfully Including People with Disabilities in Health Department Programs, Plans, and Services” and “Directory of Community-Based Organizations Serving People with Disabilities.” Contact disability@naccho.org with questions.

Dr. Robert L. Brent Receives 2014 Distinguished Public Service Award

Brent_Robert

Dr. Robert L. Brent received the 2014 Distinguished Public Service Award from the Health Physics Society (HPS) at the annual meeting held on July 15, 2014 in Baltimore, Maryland. This award and associated memorizations are intended to acknowledge outstanding contributions to the profession of health physics while in public service or service to the general public that significantly contributes to the relationship between the public and the health physics profession. This is one of the meaningful awards given by the HPS and so far only four persons have received it.

PEHDIC Hosting New Webinar Series on Early Identification of Motor Delay

AAP logoThe Program to Enhance the Health and Development of Infants and Children (PEHDIC), within the American Academy of Pediatrics, is hosting a new webinar series titled, “Early Identification of Motor Delay.” The webinar series will provide detailed guidance and resources to clinicians caring for children with Neuromotor delays. The next webinar cover the care coordination and co-management of children who have or may have a Neuromotor diagnosis. It will occur on August 26 at 3:00pm ET. Register hereClick here to read more about the webinar series.

Maternal and Child Health Library History Collection Update

The Maternal and Child Health (MCH) Library at Geblue and white computerorgetown University has updated its History Collection with new items to increase access to important historical resources. Please share this information among memberships, staff and library patrons. These resources include an index to the William McConway Hiscock Collection on Medicaid’s Early and Periodic Screening, Diagnostic and Treatment (EPSDT) Program; reports from the U.S. Children’s Bureau statistical series on child welfare, maternal and child health and crippled children’s programs, juvenile courts, infant and childhood mortality, dated 1947-1971; historical MCH posters from events and public education campaigns; and new titles on newborn screening, getting to know Title V (for families), and caring for infants from 1935 to the present.

Please visit http://www.mchlibrary.info/history/ to read these and other resources. Contributions to the library are also welcome.

Read more…

ACHA Webinar on Eisenmenger Syndrome

acha logoJoin this webinar from the Adult Congenital Heart Association (ACHA) to hear Dr. Naser Ammash, noted ACHD cardiologist and professor of medicine at the Mayo Clinic, talk about living well with Eisenmenger syndrome. Audience members will learn more about ways to help improve quality of life and outcomes. Click here to register!

 

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 Melody Imoh.

 

 

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