October 2014

In this Issue

Greetings from
the NCBDD Chair

News from NCBDDD

Newly Funded Fetal Alcohol Spectrum Disorders Efforts

Spina Bifida and Hydrocephalus Consortium Steering Committee Meeting

October: National Down Syndrome Awareness Month

October 13 is World Thrombosis Day

The Office of the Assistant Secretary for Health cordially invites you to a Webinar: Improving Health & Quality of Life of Individuals with Multiple Chronic Conditions

News from our Partners

TSA-CDC Partnership Educates Professionals and the Public Across the Country

Advancing the Pediatric Medical Home Model in Iowa: New resource from NCMHI

Management and Prevention of Pediatric Influenza in Healthcare Settings

Love That Max Blogpost: On giving your kid with special needs superhero confidence

English language training targeted to help families of children with special medical needs

New Resource – Improving Newborn Screening in Emergencies

U.S. Department of State Seeks Virtual Fellow

Conferences

AUCD 2014 Conference
November 9-12
Washington, DC

APHA 142nd Annual
Meeting and Exposition

November 15-19
New Orleans, LA

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

11th International HHT Scientific Conference
June 10-14, 2014
Washington, DC

Webinars

ACHA Webinars: The Adult with Shone’s Complex
October 20, 2014

ACHA Webinars Presents: ACHD and Birth Control
October 29, 2014

The Division of Blood Disorders Webinar Series: Venous Thromboembolism (VTE)
November 6, 2014

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 11/7/2014.
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

What’s New for October?
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 October:

Upcoming chats for @CDC_NCBDD

Topic: Twitter Chat on
World Thrombosis Day
Date: Monday, October 13
Time: 12:00PM ET
Host: American Society of Hematology, American Stroke Association, and the International Society on Thrombosis and Haemostasis
Goal: To raise awareness of risks, symptoms and treatment of thrombosis-related conditions, particularly VTE which annually accounts for >800K deaths worldwide.
Missed Chat: Follow the discussion at # ClotChat

Topic: Early Identification and Intervention
Date: Thursday, November 13
Time: 2:00PM ET
Host: March of Dimes

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 NCBDDD Chair

Adriane Griffen, ChairDear Friends,

Even if you normally skip this column, please take a few minutes to read it as we have some important updates to share. Fall has been busy so far! We have restarted the Communications Committee, recruited Champions for our key thematic areas, and been planning our in-person-meeting for November.

Communications Committee Update
The Communications Committee is a standing subcommittee of the Friends of NCBDDD. Specific charges for the committee include: 1. Highlight existing resources, like the monthly e-newsletter, website, national listserv, and twitter hash tag #FriendsNCBDDD, 2. Create a communication strategy plan, and 3. Encourage self-promotion of Friends members to foster collaboration.

The communications strategy plan has three main goals: 1. Increase awareness of NCBDDD at CDC and public health agencies, 2. Increase awareness of how your organization plays a role in public health, and 3. Increase communication with others beyond members of the Friends. To achieve these goals, we will work together across the Friends, and our sister Advocacy Coalition, to reach three main audiences: the Hill, families, and other NGOs.

Many thanks for the communications committee’s ongoing efforts to develop a streamlined approach that helps to keep you connected with each other!

Champions
We will be working with volunteers from the Friends who will serve as Champions or advisors in each thematic focus area of the Friends and NCBDDD:

  1. Saving babies through birth defects prevention and research
  2. Understanding developmental disabilities like autism to help children live to the fullest
  3. Protecting people and preventing complications of blood disorders
  4. Improving the health of people with disabilities

These Champions will serve as a member liaison for key partners whose mission and work relate to the thematic focus area. 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.

The Champions, members of the communications committee, and leaders from NCBDDD will be at our Friends working-meeting next month. You definitely want to make plans to attend and get connected! The theme of the meeting is “The Whole is Greater than the Sum of its Parts: Friends Together”

November Meeting
“The Whole is Greater than the Sum of its Parts: Friends Together”

Date: Wednesday, November 12, 12pm-4pm
Location: Renaissance Washington, 999-9th Street, NW, Washington, DC, 20001
Register: Fee for lunch $30.

Register today to secure your place at this working-meeting! Please register by October 31 so we may have a better idea of the exact number of Friends who will join us. This in-person-meeting of the Friends will be held in conjunction with the AUCD conference.

The Friends is a dynamic coalition of like-minded, engaged professionals and families in the areas of blood disorders, birth defects, developmental disabilities, and improving the health of people with a disability across the lifespan. Come prepared to contribute to this working-meeting! Here are some ways that you can prepare:

  1. Think about your calendars and bring them with you in November. We want to have a coordinated action plan for 2015.
  2. Think about your public health activities and how they are connected to one of the thematic areas.
  3. Think about your strengths, what you do well, and what talents you can share.

Elections…Remember to Vote Next Week!
We have four open slots on our Executive Committee and many great, highly-qualified candidates that our Nominations and Elections Committee have pulled together. So, let us hear from you and vote for the candidates of your choice. Each organization gets one vote – the first votes received will be the one that is counted! This year, we have streamlined the voting process and will be sharing more details on that next week. You will have the chance to meet the incoming Executive Committee at the in-person-meeting.

Thanks for reading. We look forward to seeing you in November!

Best regards,

Adriane

Adriane Signature

 

 

Adriane K. Griffen, MPH, MCHES
Chair, Friends of NCBDDD

News from NCBDDD

Newly Funded Fetal Alcohol Spectrum Disorders Efforts

CDC has recently awarded funding to FASD Practice and Implementation Centers (PICs). Six university-based centers will work closely with medical societies, national professional organizations, and national partner organizations to develop, deliver, disseminate, and evaluate FASD training programs for health care professionals addressing the prevention, identification, and treatment of FASDs. Program activities will have an increased emphasis on primary prevention, training, and sustained practice change among health care professionals. New awardees are University of Alaska Anchorage; Baylor College of Medicine; University of California, San Diego; University of Missouri; University of Nevada, Reno; and University of Wisconsin.

Read More…

Spina Bifida and Hydrocephalus Consortium Steering Committee Meeting

On September 24-25th, CDC, in partnership with the International Federation for Spina Bifida and Hydrocephalus and Boston Children’s Hospital Global Health Program, convened the first meeting of the Spina Bifida and Hydrocephalus Consortium Steering Committee. This committee is comprised of a wide range of stakeholders interested in enhancing prevention, improving the quality of and access to care, and expanding research related to spina bifida and hydrocephalus.  The purpose of this inaugural meeting was to determine the focus of the consortium, to outline key activity areas, and to discuss options for how the consortium might be structured.

October: National Down Syndrome Awareness Month

Each year, about 6,000 babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 out of every 700 babies.  As you may know, October is National Down Syndrome Awareness Month, a great opportunity for people to learn more about Down syndrome and the activities that CDC and other organizations do to research this condition.

Read more…

October 13 was World Thrombosis Day

World Thrombosis Day (WTD) is one day – October 13 – around the world dedicated to focusing attention on the often overlooked and misunderstood disease burden caused by thrombosis globally…but it is not a one-time observance.

Read more…

The Office of the Assistant Secretary for Health cordially invites you to a Webinar: Improving Health & Quality of Life of Individuals with Multiple Chronic Conditions

HHS data show that more than one-quarter of all adults and two-thirds of Medicare beneficiaries are living with multiple chronic conditions. Persons with more than one chronic disease account for two-thirds of America’s health care costs.

Read more…

Save the Date: CDC’s Public Health Grand Rounds Presents:How Pharmacists Can Improve Our Nation’s Health

Tuesday, October 21, 2014
1:00 p.m. – 2:00 p.m., EDT
CDC’s Global Communications Center (Building 19)

Read more…

New Research from NCBDDD

  • Diabetes before pregnancy and congenital heart defects

A new CDC study published in the American Journal of Preventive Medicine examined the impact of establishing glycemic control prior to pregnancy in women with type 1 or type 2 diabetes on preventing congenital heart defects. Researchers found that establishing glycemic control prior to pregnancy could potentially prevent 2,670 cases of congenital heart defects each year in the U.S. This information might be useful for women planning a pregnancy or for physicians treating women with diabetes. We invite you to visit here to read a summary of the key findings from this paper, or here to view the article’s abstract.

  • Prescription Medication Use among Women in the United States, 1999-2006

The Maternal and Child Health Journal published a new CDC study where researchers used data from the National Health and Nutrition Examination Survey (NHANES) to better understand the frequency of prescription medication use among pregnant women and non-pregnant women between 15-44 years of age. They also identified the most commonly used prescription medications within these two groups of women. CDC researchers found that almost 1 in 4 pregnant women and nearly half of non-pregnant women between 15-44 years of age reported using prescription medication in the last 30 days. These results highlight the importance of understanding the safety of medications that women use just before pregnancy and during pregnancy. For more information, we invite you to read a summary of the key findings from this paper or to view the article’s abstract.

  • Long Term Outcomes in Children with Congenital Heart Disease

In a new study published in the Journal of Pediatrics, CDC researchers examined the impact of congenital heart disease (CHD) on a child’s daily life, other illnesses or conditions, and healthcare use. Researchers found that children with CHD are more likely to report worse health overall, to need more healthcare services, and to have other health conditions (e.g., autism, intellectual disability, or asthma), compared to children without CHD. This information will be helpful to parents and healthcare providers to ensure that children with CHD receive needed services. Please visit this web feature for a summary of the key findings from this paper or view the article’s abstract.

News from our Partners

TSA-CDC Partnership Educates Professionals and the Public Across the Country

The national Tourette Syndrome Association celebrates its 11th year of program partnership with the U.S. Centers for Disease Control and Prevention (CDC) as a National Public Health Practice and Resource Center.  Through this partnership, TSA-CDC provides Tourette Syndrome (TS) education and outreach to medical, clinical and educational professionals, as well as to the general public.

Read more…

Advancing the Pediatric Medical Home Model in Iowa: New resource from NCMHI

The National Center for Medical Home Implementation (NCMHI), in collaboration with the National Academy for State Health Policy, is working to provide the most up-to-date information about exceptional state programs advancing the medical home model in pediatric populations. View this month’s Iowa state profile to find out about Iowa’s Health Home programs and their impact on pediatrics.

Management and Prevention of Pediatric Influenza in Healthcare Settings

The American Academy of Pediatrics collaborated with the Centers for Disease Control and Prevention to coordinate a 1-hour Clinician Outreach and Communication Activity http://www.bt.cdc.gov/coca/ webinar titled “Management and Prevention of Pediatric Influenza in Healthcare Settings”, in September 2014. During this webinar, subject matter experts discussed pediatric recommendations, strategies to improve influenza prevention and control in children, and ways to leverage seasonal influenza planning in pediatric offices and hospitals to improve pandemic preparedness.

Read More…

Love That Max Blogpost: On giving your kid with special needs superhero confidence

This post originally ran on Love That Max, a blog for parents of kids with special needs who kick putt. Reprinted with permission. By Ellen Seidman

Read more…

English language training targeted to help families of children with special medical needs

An Indiana University-Purdue University Indianapolis center and a local community organization are co-recipients of a Community Health Engagement Program grant of nearly $23,000 to apply academic research to solve a community health issue.

Read More…

New Resource – Improving Newborn Screening in Emergencies

Pediatricians and public health and other leaders can collaborate in their states to prepare for disasters and ensure that newborn screening services are maintained in a disaster situation.

Read More…

U.S. Department of State Seeks Virtual Fellow

Virtual Fellows ProgramSADR wishes to host a Fellow to conduct research on the accommodations provided by U.S. and other criminal justice systems for victims of gender-based violence with physical, cognitive, or psychosocial disabilities.

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 Adriane Griffen.

 

 

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