May 2013

In this Issue

A Note from the
Director of NCBDDD

Greetings from the
Chair of NCBDDD

News from NCBDDD
New Resource from
NCBDDD’s Early Hearing
Detection and
Intervention Program 

NCBDDD and Partners
Host Annual Autism
Awareness Event

News from our Partners
CURE Releases 2013
State of Research in
the Epilepsies Report

News from Autism Speaks
Government Relations

LT Molly Rutledge
Receives Therapist
Junior Officer
of the Year Award

ACHA Event to be
Held in Portland

NBCA Coordinates
One-Day Symposium
on AC Management

Free Webinar on
Incorporating Best
Practices in
Family-Centered Care

ACHA to Hold Webinar
on Atrial and Ventricular
Septal Defect

Upcoming Meetings
& Conferences

Training Program on
Surveillance and Prevention
of Birth Defects and
Preterm Births

May 27-31
Geneva, Switzerland

2013 International Research
Conference on TSC and
Related Disorders:
Molecules to Medicines

June 20-23
Washington, DC

Amputee Coalition
National Conference

June 27-29
Orlando, FL

July 10-12
Dallas, TX

2013 Southwest
Conference on Disability

October 8-11
Albuquerque, NM

6th International Conference
on Birth Defects and Disabilities

in the Developing World
November 10-13
Cebu, Philippines

Upcoming Webinars
& Webcasts

Public Health Grand Rounds
May 21, 1 pm ET
Watch via Webcast

ACHA Webinar
ASD and VSD in the Adult
with Congenital Heart Disease

May 15, 7 pm ET

Click here to register

How to Incorporate Best
Practices in Family-Centered
Care in Your Practice

May 29, 12 pm ET

Click here to register

HealthMeet Webinars
Adults with Intellectual and
Developmental Disabilities
and Dementia; Assessment
and Healthcare Practices

May 15, 2 pm ET

Click here to register

Using Smart Technology
and the Cloud to Make
Telehealth Accessible for
People with I/DD

Click here to register

The President’s Committee
for People with Intellectual
Disabilities Report and
Recommendations for
Managed Long-Term
Services and Supports

Click here to register


ADHD Research
Award Program

Deadline: May 15

Alcohol SBI and

Deadline: May 24

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 June 7.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen,
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
Melissa Putman,
Advocacy Coalition Co-Chair
Randy Fenninger,
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

NCBDDD’s Social
Media Corner

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:



Join the Friends of
NCBDDD Listserv

A Note from the Director of NCBDDD

Coleen A. Boyle, PhD, MS Hyg Director, NCBDDDDear Friends,

The last few months have been challenging with the anticipation and then implementation of the sequestration reductions to the Federal budget on March 1, 2013. I want to personally thank all of you for your patience and valuable feedback as we work to implement the letter and spirit of the sequester law. NCBDDD implemented this law across all NCBDDD’s appropriated lines and —to the extent possible—protected our core public health functions.

As you know, CDC’s Procurement and Grants Office (PGO) is contacting all grantees and funded partners to address the impact of sequestration on specific awards. While we want to keep you all informed about this process, it is important for PGO to make the initial contact with all the grantees that are immediately impacted by these cuts. NCBDDD is committed to engaging partners on these sequestration reductions once PGO completes its outreach efforts; however, depending on the grant cycle, these engagements may be delayed until the end of the fiscal year.

Although we cannot be specific about these impacts at this time, I can share with you some of the potential impacts we may be facing with the implementation of the first, in what could potentially be a series of sequestration reductions, proposed for the next 10 years:

  • One in six people live with a significant disability, and 70% of the $400 billion spent on disability-related health expenditures are paid through public resources. This is the only public health program specifically charged to protect and promote the health of this population. The decrease in FY 2013 funding will result in important reductions in the capacity to address the public health needs of this population.
    • One in every 33 babies is born with a birth defect. Birth defects are common, costly, a leading cause of infant death in the US, and can cause lifelong disabilities. Cuts to our birth defects budget will limit our prevention efforts and our efforts to inform the safe use of medications during pregnancy.
    • Autism affects an estimated one in 88 children in the U.S. and is one of the most significant public health issues facing families and our nation today. Cuts to our autism budget reduce our capacity to provide timely data to parents, policymakers and other stakeholders on prevalence, characteristics and disparities—essential information that helps answer important questions about the causes of and needs of people living with autism.
    • The average treatment cost for a person with hemophilia is $150,000 per year. If the person develops an inhibitor (antibody) to the product used to stop their bleeding, the cost of their treatment can skyrocket to over $1,000,000 annually. The cost for US government health programs totals close to $300 million per year. CDC is researching causes of inhibitor development and testing strategies to reduce the rate of inhibitor development. Reduced funding for these research activities could result in higher treatment costs and a decrease in the quality of life for affected persons and families.

In addition to sequestration, CDC continues to face a challenging budgetary environment. The proposed FY14 budget calls for a significant reduction in NCBDDD’s base budget, offset with Prevention and Public Health Funding (PPHF). If enacted, NCBDDD’s base budget authority would be reduced by $42.24 million – a 44% decline in base authority and the largest base budget reduction for any National Center at CDC. The resulting base budget of $87.83 million would be the lowest base budget in the history of NCBDDD.

In the face of these actual and proposed budget cuts, I want to assure you that we’re doing all that we can to reduce spending across core administrative costs, including training, travel for meetings, conference attendance, printing, conference sponsorship and employee IT devices. We’re limiting hiring to only critical positions. And, we’ve done our best to protect grants to state and local health departments to the extent possible. Thank you again for your continued support and partnership as we work through this process. We look forward to continued discussions on these issues with all of you.

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 Chair of NCBDDD

Adriane Griffen, ChairThanks to all who participated in the “Real-World Social Media Stories to Strengthen Your Efforts” webinar! The archived webinar and slides can now be found on the Friends of NCBDDD website:

We’ve heard you and will be exploring social media platforms for the Friends to share timely updates. More information will follow in June!

Best regards,
Adriane Signature
Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

News from NCBDDD

New Resource from NCBDDD’s Early Hearing Detection and Intervention Program

A new easy-to-use online directory, the Pediatric Audiology Links to Services (PALS), helps families and referring physicians find the nearest clinic that can provide the type of hearing service each child needs: The Early Hearing Detection and Intervention Program in NCBDDD helped coordinate a non-profit group of government, professional and parent organizations to build this directory. PALS is not connected to any marketing effort by the facilities listed.  Clicking “Find a Facility” on the homepage takes visitors to a few simple questions that help pinpoint their location and need. Then the program generates a list of the nearest audiology facilities that match the request. Each listing comes with clinic information, including:

  • audiology (hearing & balance testing) services
  • type of language interpretation available
  • payment options
  • appointment availability

The site also suggests questions for parents to ask when making the appointment, contact information to reach state early hearing programs, and links to national and state parent support organizations and other resources.

NCBDDD and Partners Host Annual Autism Awareness Event

On April 25, in Atlanta, GA, NCBDDD partnered with several local organizations, to host the 7th annual Autism Awareness Month event. The event featured a video welcome from CDC Director Dr. Tom Frieden as well as keynote speakers Dwayne Ballen and Dr. Stephen Shore. Mr. Ballen is an award-winning television journalist and the author of Journey with Julian, which tells the story of his family’s experiences with autism. Dr. Shore is a college professor, author, and highly sought-after speaker on issues related to living with autism spectrum disorders.

News from our Partners

CURE Releases 2013 State of Research in the Epilepsies Report

CURE logoCURE recently released its 2013 State of Research in the Epilepsies report. The Report details promising trends and major challenges in the arena of epilepsy research. Data was compiled from sources including the Institute of Medicine, National Institutes of Health, National Institute of Neurological Disorders and Stroke, the Centers for Disease Control and Prevention as well as a number of epilepsy researchers. To assess progress in epilepsy research, CURE conducted an analysis of available data from multiple sources. This analysis identified a number of promising trends and challenges in epilepsy research since the organization’s first report in 2010. The full report can be found here.

News from Autism Speaks Government Relations

Autism Speaks joined with other disability advocates at a White autism speaks logoHouse event on April 2, 2013, World Autism Awareness Day, as President Obama announced the $100 million BRAIN initiative to focus research on brain disorders. Prior to the ceremony, Autism Speaks was given access to the Blue Room in the White House to celebrate Light It Up Blue. Over 8,000 landmarks and iconic buildings in all 50 states, 750 cities, and 90 countries “lit up blue” during April to raise awareness of autism.

  • State employees in New Mexico and Ohio have gained insurance coverage for autism benefits through initiatives championed by Autism Speaks. New Mexico Gov. Susana Martinez signed a bill extending coverage provided under the state’s 2009 autism insurance reform law; in Ohio, Gov. John Kasich offered the coverage to the state’s five public employee unions and it was incorporated into their collective bargaining agreements.
  • Lorri Unumb, Autism Speaks vice president for state government affairs, was the keynote speaker at the Cambridge Center for Behavioral Studies’ West Coast Conference in San Jose on April 22. Unumb familiarized parents and providers with different types of insurance offerings, and explained how to approach employers who self-insure their coverage how to voluntarily offer autism benefits.
LT Molly Rutledge Receives Therapist Junior Officer of the Year Award

LT Molly RutledgeLT Molly Rutledge, an active duty officer for the United States Public Health Service (USPHS), received the 2012 Therapist Junior Officer of the Year award. The Therapist Junior Officer of the Year Award is presented to a junior officer who is recognized by his or her peers for overall performance in the delivery of quality healthcare and outstanding contributions in the area of clinical healthcare/healthcare management.  LT Rutledge is the first SLP to receive this award in the history of the USPHS.  She is currently stationed at Tséhootsooí  Medical Center in Fort Defiance, AZ.

ACHA Event to be Held in Portland

The Adult Congenital Heart Association and the Oregon Healthacha logo
ohsu logoScience University Adult Congenital Heart Program are hosting an event for adults with congenital heart disease and their family and friends. This event is  for networking, advocacy and awareness. It will take place on June 8, from 9:30 am – 12:00 pm, at Portland Center Stage in Portland, OR. To RSVP, please email

NBCA Coordinates One-Day Symposium on AC Management

NBCA logoOn May 8, the National Blood Clot Alliance (NBCA) convened a one-day symposium, Effective Anticoagulation (AC) Management: Focus on Promoting and Simplifying Adherence as an official affiliate meeting of the Anticoagulation Forum.

This symposium engaged key opinion leaders in AC management, as well as thought leaders in the field of medication adherence, to analyze and create practical, evidence-based recommendations and tools to optimize AC adherence among patients affected by venous thromboembolism and patients affected by atrial fibrillation. Toward that end, a panel of experts in both AC management and adherence addressed several topics of significance in this field, including risk factors associated with patient departure from prescribed medication usage, as well as methods of reinforcing adherence. This meeting examined adherence with both older and newer anticoagulants, as well as the latest tools and interventions for potential application in the AC arena.  In addition, NBCA coordinated workshops at this symposium to help shape recommendations for AC adherence that NBCA will distribute to select AC Forum AC clinics for impact evaluations. Division of Blood Disorders Director, Lisa Richardson, MD, MPH, and JoAnn Thierry, PhD, and Mary George, MD, MPH, FACS, from the Division for Heart Disease Prevention and Stroke from CDC participated.

NBCA will compile and distribute proceedings on its Web site (, YouTube channel and other widespread distribution to promote adherence. In addition, screening and other educational tools will be developed as well as impact evaluations at selected anticoagulation clinics. Lastly, NBCA advocacy will promote the importance of adherence with respect to improved health outcomes in relation to the Affordable Care Act. This information will be available to the Friends of NCBDDD.

Sponsorship support provided by Boehringer Ingelheim and Janssen Pharmaceuticals.

AAP/NCMHI Hosting Free Webinar on Incorporating Best Practices in Family-Centered Care

AAP NCMHI logoThe American Academy of Pediatrics (AAP) and its National Center for Medical Home Implementation (NCMHI) are hosting a free webinar, How to Incorporate Best Practices in Family-Centered Care in Your Practice, on Wednesday, May 29, 2013 at 12:00pm CT. Register here!

This webinar will provide participants with a clear description of family-centered care and highlight case studies that showcase effective strategies in delivering that care through practice improvements such as greater use of health information technology, enhanced access to medical professional staff outside regular office hours, feedback mechanisms capturing patient/family experience with care and including families on advisory boards and as staff. A soon-to-be published monograph by the NCMHI will also be highlighted, which features case studies focusing on 17 pediatric practices nominated by their peers or patients as exemplary patient- and family-centered medical homes.

Note that this is the fourth and final webinar of a series hosted by the AAP and NCMHI. All webinars are archived on the NCMHI website. The target audience for the webinars is pediatric primary care providers, specialists, patient and family advocates, policy administrators and anyone wanting to advance the medical home model for all children and youth.

ACHA to Hold Webinar on Atrial and Ventricular Septal Defect

acha logoDuring this ACHA webinar, Dr. Naser Ammash, noted ACHD cardiologist, will talk about the structure and function of the heart in an adult with either a ventricular or atrial septal defect and indications for repair, as well as make the audience aware of any potential problems to look for. This webinar will take place on Wednesday, May 15, from 7:00 – 8:00 pm ET. Click here to register!

The Friends of NCBDDD is a coalition of government and private sector participantswho 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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