August 2013

In this Issue

A Note from the
Director of NCBDDD

Greetings from the
Friends of NCBDDD Chair

News from NCBDDD
September is Sickle Cell
Awareness Month: “Be
Sickle Cell Savvy: Learn
the Facts”

Renowned Scientists Discuss
Historic Folic Acid Research
And Birth Defects Prevention

CDC’s Disability and Health
Data System

News from our Partners
FDA Communications
Open for Public Comment

New Online Course

News from the
Amputee Coalition

2013 Annual Conference
of the American Music
Therapy Association

NCHPAD’s 14-Week
Program to a Healthier You

Exceptional Parent Magazine’s
Annual Education Issue

Louisville Researchers
Conducting Study on Access
Access to Primary Healthcare
by Wheelchair Users


CHADD Regional

September 21
Dallas, TX

2013 Walking Summit
October 1-3
Washington, DC

2013 Southwest
Conference on Disability

October 8-11
Albuquerque, NM

AAP National Conference
& Exhibition

October 26-29
Orlando, FL

CHADD International

November 7-9
Crystal City, VA

6th International Conference
on Birth Defects and Disabilities

in the Developing World
November 10-13
Cebu, Philippines

AUCD 2013 Conference
November 17-20
Washington, DC

AMTA 2013 Conference
November 21-24
Jacksonville, FL

2014 AFB
Leadership Conference

February 27-March 1
New York City, NY

Upcoming Webinars
& Webcasts

Public Health Grand Rounds:
Encore Presentation:
Preventing Adverse Health
Effects from Nanotechnology
August 20, 1:00 pm ET
Watch via Webcast

HealthMeet® Webinar:
Health Care for Aging
Adults with Intellectual/
Developmental Disability
August 21, 2pm ET

Click here to register

CDC Public Health Series
on Hemoglobinopathies:
Mental Health and Learning
Needs in Children with
Sickle Cell Disease
August 22, 2:00 pm ET
Click here to join,
then enter 84QK2D


2013 APHA Disability
Section Scholarships
Contact Dot Nary with
questions or for more

Deadline: September 2

Tuberous Sclerosis Alliance
Rothberg Courage
Award in Research
LOI Deadline: September 23

Deadline: October 22

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
Tory Christensen by Sept. 6.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen,
Chair (
Craig Mason,
Vice Chair
Jeff Cohen,
Judit Ungar,
Member at Large
Cindy Brownstein,
Member at Large
Carolyn Mullen,
Member at Large
Alan Brownstein,
Member at Large
Mary Andrus,
Member at Large
Emil Wigode,
Advocacy Coalition Liaison
Annie Acosta,
Advocacy Coalition
Randy Fenninger,
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

NCBDDD’s Social
Media Corner

Upcoming Facebook Chat
Topic: Sickle Cell Disease
Discussant: Dr. Althea Grant,
Partner: Sickle Cell Disease
Date: September 5
Time: 12:00 pm ET
How to Join: “Like” SCDAA’s
Facebook page

Leadership on Twitter:

Dr. Coleen Boyle,
NCBDDD Director:

Dr. Althea Grant,
in the Division of
Blood Disorders:

Dr. Scott Grosse,
Research Economist
in the Division of
Blood Disorders:

Dr. Georgina Peacock,
Developmental Pediatrician in
the Division of Birth Defects
and Developmental Disabilities:

Susanna Visser,
in the Division on Human
Development and Disability:



Center Brochure

From Beginning to End,
A Better Life for All

NCBDDD Brochure Cover, Pictures of Children

Saving Babies through
Birth Defects Research
and Prevention

Understanding Autism
to Help Children Live
to the Fullest

Improving the Lives of
People with Disabilities

Understanding the Impact
of Blood Disorders


Join the Friends of
NCBDDD Listserv

A Note from the Director of NCBDDD

Coleen Boyle PictureAs you know, CDC is participating in the national initiative to enroll millions of uninsured Americans through the new Health Insurance Marketplace that will open for business on October 1, 2013, with coverage effective January 1, 2014.

NCBDDD continues to view this as an opportunity to improve population health. Research (e.g., the Oregon experiment) has shown that when people acquire health insurance, they use that insurance to access clinical preventive services such as blood pressure checks and colonoscopies. And, when millions of people acquire health insurance and access clinical preventive services, population health can improve.

As part of this national effort, NCBDDD has committed to help get the word out to national, state and local public health organizations. We hope that you will work with us to help promote enrollment and educate potential enrollees of the preventive services that will be available.

During the month of August, HHS will begin promoting the Health Insurance Marketplace with a different theme each week: Women, Small Business, Communities of Color and Young People. With early August’s focus on Women, NCBDDD is poised to encourage women to get ready to enroll in health insurance coverage.

Did You Know?

26.9 million women with private health insurance gained expanded preventive services with no cost-sharing in 2011 and 2012, including mammograms, cervical cancer screenings, prenatal care, flu and pneumonia shots, and regular well-baby and well-child visits.

Enrollment for 2014 begins in just two months, and we would like to work with you to be sure your membership has the information and materials they might need. To help spread the word about the Health Insurance Marketplace:

• Post the badges, banners and this video on your websites and social media sites.
• Include content in your newsletters or listservs.
• Share information through presentations, speeches, and interviews.
• staff on what they can do in their roles as family members, friends, and professionals.
• Distribute and post materials.
• Help enroll consumers.

Please join NCBDDD and help spread the word by visiting to get ready and learn more.

Coleen Boyle signature

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

Greetings from the Friends of NCBDDD Chair

Adriane Griffen, ChairHello, Friends!

Thank you for your participation in our Friends tweet-a-thon. It has been great getting to know you better and learning more about what you do. This week we wrap up with a discussion on how you use data to further your mission and work. So, take just a minute and let us know what ways you use data and tweet with the hash tag #FriendsNCBDDD.

Here are some sample tweets for you to use and fill in:
• #FriendsNCBDDD use data to show the number of people living with __.
• Data helps (organization name) make the case for funding opportunities. #FriendsNCBDDD
• We use data to educate policy makers about (specific condition/disability). #FriendsNCBDDD

If you have not joined in the tweet-a-thon yet, this is the perfect chance! We look forward to hearing from you.

Let’s continue to use Twitter to stay in touch when news happens! September is National Emergency Preparedness Month. Health Insurance Market Place enrollment begins October 1. There are lots of reasons to stay connected! Share your updates on what you are up to throughout the weeks to come. Just include the hash tag #FriendsNCBDDD and you will be on your way to connecting with over 460 colleagues around the country.

We look forward to continuing our conversations with you.

Yours in health,

Adriane Signature

Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

News from NCBDDD

September is Sickle Cell Awareness Month: “Be Sickle Cell Savvy: Learn the Facts”

Image of two women and two childrenAre you sickle cell savvy? How much do you know about sickle cell disease and sickle cell trait? As part of National Sickle Cell Awareness Month this September, we want to raise awareness and knowledge of this inherited blood disorder that can cause pain, damage to vital organs, serious infections and even lead to early death.

NCBDDD would like to encourage partners to continue to engage, support and take advantage of awareness month milestones to raise awareness among your member organizations and constituencies. These observances help draw attention to NCBDDD’s critical focus areas and topics, and partners play a vital role in helping NCBDDD educate the public about health risks, and successful approaches to health promotion events and campaigns. NCBDDD would like you to invite your members and constituents to join an important Sickle Cell Awareness Month chat by sharing the announcement below on your Facebook and Twitter pages:

CDC Facebook Chat
Thursday, September 5, 2013
12:00-1:00pm ET

Please consider joining us for this Facebook chat if you have sickle cell disease; carry the trait for sickle cell disease; are a family member of, or know someone affected by, sickle cell disease; or are someone who suspects they may have sickle cell disease or sickle cell trait. Dr. Althea Grant, along with Sonja Banks of the Sickle Cell Disease Association of America, will answer your questions. For more information on blood disorders, check out

Renowned Scientists Discuss Historic Folic Acid Research and Birth Defects Prevention

Folic acid fortification was recently named one of the Ten Great Public Health Achievements in the United States (2001-2010). Mandatory folic acid fortification of cereal grain products labeled as enriched in the United States beginning in 1998 contributed to a 36 percent reduction in neural tube defects from 1996 to 2006. Additionally, folic acid fortification prevented an estimated 10,000 neural tube defects in the past decade, resulting in a savings of more than $4 billion in direct costs. Many organizations and individuals were critical to this public health success story. Watch this video as CDC scientists who directed the agency’s early folic acid activities discuss the research that led to fortification in the United States.

CDC’s Disability and Health Data System

NCBDDD is excited to announce new updates to the Disability and Health Data System (DHDS), a CDC data tool that provides disability-specific information on a variety of health indicators. New DHDS features recently released include 2011 Behavioral Risk Factor Surveillance System (BRFSS) data, new single year indicators stratified by demographics groups, new p-values for each disparity estimate, improved indicator names.

For more information about how to use the system, please read or download DHDS fact sheets. If you have questions about how to use the system, please email us at For more information on CDC’s Disability and Health work, click here.

News from our Partners

FDA Communications Report Open for Public Comment

FDA LogoThe U.S. Food and Drug Administration has issued a report on how the agency communicates the benefits and risks of medical products to health care providers and patients, especially underrepresented populations, including racial subgroups. FDA has opened a docket to seek public comment on the report’s findings and FDA’s communication plans going forward. Please submit electronic or written comments by September 9, 2013. More information is available in English, 中文 (Chinese), Français (French), Español (Spanish), Tagalog (Tagalog), and Việt (Vietnamese). Contact for more information.

NAPNAP Offers New Online Course

NAPNAP LogoNAPNAP celebrates World Breastfeeding Week 2013 by launching our newest online course, Developing and Maintaining a Milk Supply.  This course was archived from a presentation at our 2013 Annual Conference, and reviews the management of the mother-baby pair with low milk supply or over supply of milk. This course offers 1.0 NAPNAP contact hour, of which 0.25 is pharmacology content, and will be available until July 30, 2015.

News from the Amputee Coalition

National Conference Held in June
Amputee Coalition LogoThe Amputee Coalition held its National Conference last month at the Renaissance Orlando at Sea World. The 2013 National Conference had 950 registered attendees, including two survivors of the Boston bombing who lost limbs, Extreme Makeover Weight Loss Edition contestant Ryan Sawlsville. This was a new attendance record for our conference. Attendees came from 41 states and nine countries. The conference featured a key note address from Dr. Roy Bloebaum on osseointegration, as well as a plenary session on limb transplantation featuring Dr. Brian Carlsen from the Mayo Clinic and Dr. Matthew Carty from Brigham and Women’s Hospital.

Paddy Rossbach Youth Camp Recently Held
The Amputee Coalition wrapped up its 2013 Paddy Rossbach Youth Camp on July 24. This year 88 children with limb differences attend the five day camp held at the Joy Outdoor Education Center in Clarksville, OH.

The five-day summer camp offered a full range of activities, including fishing, swimming, zip lining, canoeing, theater, dance, archery, several adaptive sport and recreation clinics led by members of the US Paralympic team, and more. The Coalition covered all costs associated with attending the youth camp. To learn more about camp or to donate, please visit the Paddy Rossbach Youth Camp website.

2013 Annual Conference of the AMTA

AMTA LogoThe American Music Therapy Association (AMTA) Annual Conference celebrates the best in music therapy. This year, the theme of Voices of the Sea: Music Therapy @ Florida will highlight the incredibly vibrant music therapy scene in Florida.

AMTA’s 2013 Conference will be held at the Hyatt Regency, located on the river in the heart of Jacksonville, Florida. Nearby, are miles of beaches, natural splendors and a healthy cultural community. The opening session starts November 21 at 7:00 pm. Mark your calendar:  Don’t miss this opportunity to celebrate all things music therapy!

NCHPAD’s 14-Week Program to a Healthier You

NCHPAD LogoThe National Center on Health, Physical Activity and Disability’s (NCHPAD) 14-Week Program to a Healthier You is your answer to reaching your physical activity and nutrition goals! NCHPAD is offering a computer based physical activity and nutrition program for people with chronic health conditions, mobility impairments and physical disabilities. By registering, you will gain exclusive access to exercise and nutrition experts who can provide you with personalized guidance along the way. To sign up for NCHPAD’s 14-Week Program or for more information please click here and click “join” in the upper right hand corner of the screen. Click here to watch an advertisement about the 14-week program please.

If you have questions, please contact Bob Lujano via email ( telephone (1-800-900-8086) or via live chat (

Exceptional Parent’s Magazine’s Annual Education Issue

Exceptional Parent LogoContribute to Exceptional Parent Magazine’s Annual Education Issue! Exceptional Parent (ep) provides practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied health care professionals and educational professionals who are involved in their care and development.

For the upcoming September Education issue, submit article ideas or your nomination for Teacher of the Year to Vanessa Ira at Article submissions should be 1600-2000 words and all photos should be submitted in JPEG format. The deadline for Teacher of the Year nominations is August 14 and the deadline for submission of articles is August 16.

Louisville Researchers Conducting Study on Access to Primary Healthcare by Wheelchair Users 

The ADA requires full access to health care services and the facilities where the services are provided. These requirements include making reasonable modifications to policies, practices and procedures when necessary to insure that services are fully available to people with disabilities. Despite these requirements, as many as 60% of doctors’ offices are not accessible to individuals who use a wheelchair. Many health care providers don’t know that the ADA requires accommodations like accessible weight scales, height-adjustable exam tables, and staff who are both trained and willing to assist patients who use a wheelchair. The absence of accessible equipment and unknowledgeable staff is not only a violation of the ADA, but it can lead to patient frustration and incomplete care. A group of researchers associated with the NRN in Louisville, KY are interested in learning how often wheelchair users access primary and specialty health care services, and what accessibility issues they encounter.  You can participate by taking the anonymous survey at You can also learn more about your rights to full and equal health care access under the ADA by downloading this helpful brochure:

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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