September 2014

In this Issue

Greetings from
the Director of NCBDD

News from NCBDDD

Executive Committee Nominations Due

September is Sickle Cell Awareness Month

September 9: International Fetal Alcohol Spectrum Disorders (FASD) Awareness Day!

October: National Down Syndrome Awareness Month

NCBDDD Personnel Announcements

Marcus Gaffney, Team Lead, Early Hearing Detection and Intervention (EHDI)

Dr. Jennifer Kaminski, Team Lead, Child Development Studies (CDS)

News from our Partners

OAR Launches “Autism Sibling Support” Initiative with Three New Resources

Guidelines for Disability Inclusion in Physical Activity, Nutrition, and Obesity Programs and Policies

Save the Date: Management and Prevention of Pediatric Influenza in Healthcare Settings Webinar

Emergency Preparedness Stories – AAP Members Share Disaster Experiences and Lessons Learned

Randy Fenninger Selected as Chief Executive Officer of the National Blood Clot Alliance

Conferences

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

Management and Prevention of Pediatric Influenza in Healthcare Settings Webinar
September, 18

The Economic Burden of Congenital Heart Disease Treatment on Families
September, 17

Funding Opportunities

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
Adriane Griffen by 10/3/2014.
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 September?
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 September:

Upcoming chats for @CDC_NCBDD

Topic: Twitter chat on FASDs
Date: Tuesday, September 09
Time: 2:00PM ET
Host: NOFAS (@NOFAS_USA)
will beco-hosting with NIAAA (@NIAAAnews)
NCBDDD SME: Coleen Boyle [@CDC_NCBDDD]
Missed the chat?
Use #NIAAAChat to follow the discussion.

Topic: Twitter Chat on
Preparedness for Vulnerable Populations
Date: Wednesday, September 10
Time: 3:00PM ET
Host: CDC OPHPR @CDCemergency
NCBDDD SME: Georgina Peacock
[@CDC_NCBDDD]
Missed Chat: Use #CDCprep to
follow the discussion.
 
Topic: Twitter Chat:
Emergency Preparedness for Little Ones
Date: Wednesday, September 17
Time: 1:00PM ET
Host: ASPR @PHEgov
NCBDDD SME:
Georgina Peacock [@CDC_NCBDDD]
How to Join:
Use #Prep4Kids to join the discussion.

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 Director of NCBDDD

 

Greetings!

Data suggest that clinical best practice guidelines for attention-deficit/hyperactivity disorder (ADHD) are not being followed.  NCBDDD is working to align current practice and best practice to make sure young children (2-5 years of age) receive recommended behavioral therapy treatment for ADHD.  This first-line treatment can safely and effectively treat ADHD symptoms in young children, leading to more U.S. children who grow healthy, reach their full potential, and live a productive adult life.

ADHD is a serious public health problem because of its high prevalence; chronic nature; significant impact on school performance, family life, and peer relationships; and estimated annual cross-sector costs of $38-72 billion.  It is also the most common neurobehavioral disorder of childhood, diagnosed in 11% of children 4-17 years of age. Children and adults with ADHD experience higher rates of injury, academic and career failure, and earlier death.

Fortunately, the American Academy of Pediatrics has published guidelines for ADHD, describing best practices for the diagnosis and treatment of ADHD for children as young as 4 years of age and as old as 17 years of age.  The challenge is that although these guidelines recommend behavioral therapy as the first-line treatment for children 4-5 years of age, national data suggest that a large number of these children are being treated with medication and less than half of 4-to-5 year-olds who have been diagnosed with ADHD receive behavioral therapy.  Further, new data indicate that many children as young as 2-to-3 years of age are being diagnosed with ADHD, and many of these children are receiving medication for treatment.

NCBDDD uses data to inform clinical and state programs and policies, important work that must continue.   More must be done, however, to evaluate the reasons for the misalignment between current clinical practice and best practices for the diagnosis and treatment of ADHD in young children.  NCBDDD is poised to help clinical and public health partners identify and address the barriers to meet these best practice guidelines and provide data that can be used for strategic, data-driven action to give children the care that best supports their health and development.

I invite you to learn more at www.cdc.gov/adhd or contact Dr. Susanna Visser (SVisser@cdc.gov) to get your organization involved.

Coleen

 

 

Coleen A. Boyle, PhD, MS Hyg
Director, National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

News from NCBDDD

Executive Committee Nominations Due 

This is a fantastic opportunity that connects you with Center leaders at NCBDDD and partners across the country.  Four seats need to be filled.  Nomination guidelines are attached and below. The nomination period is from September 2 through October 3, so throw your hat into the ring!

Read More…

September is Sickle Cell Awareness Month: New Tool for Teachers:  Find out how teachers and others can help children with this condition.

NCBDDD has created a new booklet for teachers of students with sickle cell disease (SCD), Tips for Supporting Students with Sickle Cell Disease [969 KB].

Read more…

September 9: International Fetal Alcohol Spectrum Disorders (FASD) Awareness Day!

In honor of FFASASD Awareness Day, which was celebrated on September 9th, and to continue raising awareness about alcohol use during pregnancy and FASDs, NCBDDD invites you to view the feature on the CDC home page. The direct link to the feature, where it will remain accessible after it is gone from CDC’s home page, is www.cdc.gov/features/living-with-fasd.  Also, check back for a Spanish version of the feature that will be available soon at www.cdc.gov/spanish/especialesCDC/vivir-con-teaf/.

Read more…

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.  CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) will feature a number of activities throughout the month of October to raise awareness about Down syndrome.

Read more…

NCBDDD Personnel Announcements

Marcus Gaffney, Team Lead, Early Hearing Detection and Intervention (EHDI)

Marcus GaffneyMarcus Gaffney has accepted the position of Team Lead of the Early Hearing Detection and Intervention (EHDI) within NCBDDD’s Division of Human Development and Disability.  Marcus has been a long term key member of the EHDI Team and brings a strong history of a process of collaboration, innovation and successful improvement towards the fulfillment of the national goals.

Read more…

Dr. Jennifer KaminskiTeam Lead, Child Development Studies (CDS)

Dr. Jennifer KaminskiDr. Jennifer Kaminski has accepted the position of Team Lead of the Child Development Studies (CDS) within NCBDDD’s Division of Human Development and Disability.

Read more…

News from our Partners

OAR Launches “Autism Sibling Support” Initiative with Three New Resources

TeensThe Organization for Autism Research (OAR) is expanding its collection of informational materials and shining the spotlight on an important but often overlooked demographic: brothers and sisters of individuals with autism. To kick off its “Autism Sibling Support” initiative, OAR has released a set of three new resources that are now available online for free download and printing: one for parents, another for teenage siblings, and a third for young siblings.  These not only validate siblings’ feelings and provide a sense of comfort in knowing that they’re not alone, but offer practical and age-appropriate guidance on how to address some of the difficulties they’re likely to experience. All three can be effective when used independently or as a supplement to a more comprehensive support plan/program.

Guidelines for Disability Inclusion in Physical Activity, Nutrition, and Obesity Programs and Policies

Guidelines short_logosAs part of the National Center on Health, Physical Activity and Disability (NCHPAD) in partnership with the American Association on Health and Disability (AAHD), the Center on Disability at the Public Health Institute (COD-PHI) has released Guidelines for Disability Inclusion in Physical Activity, Nutrition, and Obesity Programs and Policies.  These guidelines will assist in the updating of community health promotion programs and policies to be inclusive of the needs of people with disability.  The guidelines were generated based upon previously recommended guidelines and structured input, review, and validation from a panel of national experts.  The guidelines can be used by government and private entities and organizations that create, implement, or oversee program initiatives and policies in the areas of physical activity, nutrition, and obesity.  For more information on the Guidelines for Disability Inclusion please contact the partners on this project, Lewis Kraus with COD-PHI and Roberta Carlin with AAHD by following the link.   On October 6th, the Guidelines for Disability Inclusion will be highlighted at the White House Summit and Research Forum on Improved Health and Fitness for Americans with Disabilities and included in a Call to Action titled Commit to Inclusion to be released in October of 2014.

Save the Date: Management and Prevention of Pediatric Influenza in Healthcare Settings Webinar

September is National Preparedness Month, this year’s theme is “Be Disaster Aware, Take Action to Prepare”. The American Academy of Pediatrics (AAP) has collaborated with the Centers for Disease Control and Prevention (CDC) to coordinate a 1-hour Clinician Outreach and Communication Activity (COCA) call/webinar during National Preparedness Month, titled “Management and Prevention of Pediatric Influenza in Healthcare Settings”, that will be taking place on Thursday, September 18, 2014, at 2:00pm ET/1:00pm CT.

Read more…

Emergency Preparedness Stories – AAP Members Share Disaster Experiences and Lessons Learned

The American Academy of Pediatrics (AAP) and the Centers for Disease Control and Prevention (CDC) collaborated to compile stories that highlight lessons learned or steps that doctors and families can take to improve disaster preparedness for children. AAP members Karen Landers, MD, FAAP; Grant Allen, MD, FAAP; Natalie Stavas, MD; and Dennis Cooley, MD, FAAP, shared their stories.

Read more…

Randy Fenninger Selected as Chief Executive Officer of the National Blood Clot Alliance

Randy Fenninger was selected as Chief Executive Officer of the National Blood Clot Alliance (NBCA) effective August 25, 2014.  NBCA is a patient driven voluntary health organization focused on building public awareness about the public health problems associated with blood clots.  He had previously been an active volunteer, serving as a member of NBCA committees, the Board of Directors and two terms as president.

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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