September 2012

In this Issue

A Note from the
Director of NCBDDD
September is Sickle Cell
Awareness Month

News from NCBDDD
NCBDDD Personnel

60th Annual CDC & ATSDR
Honor Awards – NCBDDD
Award Recipients

Parent Corner
Employment and
Health Promotion

News from the
Friends of NCBDDD
Executive Committee
Nominations Now Open

News from our Partners
OAR Announces Release
of New Guidebook

Amputee Coalition Issues
White Paper

The Arc Receives
Award from CDC

Bright Futures Family Pocket
Guide Now Available

Celebrate National Audiology
Awareness Month and National Protect Your Hearing Month

FASD Addressed at
AAP Workshop

MDA Launching National
Registry through the
MDA Clinical Network

New ASD Guide for Parents
and Caregivers Available

NACCHO Accepting Model
Practices Applications

Upcoming Events

National Forum
on Disability Issues

September 28, 2012
Columbus, OH
Follow on facebook & Twitter!

2012 International
Conference on Stillbirth,
SIDS,and Infant Survival

October 5-7, 2012
Baltimore, MD

2012 Southwest
Conference on Disability

October 9-12, 2012
Albuquerque, NM

AMTA 2012 Annual Conference
October 11-14, 2012
St. Charles, IL

2012 APHA Annual Meeting
October 27-31, 2012
San Francisco, CA

American Society of Human
Genetics 62nd Annual Meeting

November 6-10, 2012
San Francisco, CA

CHADD Annual International
Conference on ADHD

November 8-10, 2012
San Francisco, CA

2012 AUCD Annual Meeting
December 1-5, 2012
Washington, DC

Friends of NCBDDD Meeting
December 1-5, 2012
Washington, DC

Upcoming Webinars

APHA Disability Section
Student Webinar Series
Physical Activity Health Promotion
October 2, 2-3 pm ET

Time Out for Genetics:
Genetics and Coding: What the Primary Care Provider 
Needs to Know
September 27, 12-12:30 pm CT


AAHD Scholarship Program
*Deadline: November 15

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
October 12, 2012. Photos
and web links are encouraged!

NCBDDD’s Social
Media Corner

Upcoming! Emergency Preparedness Chat
Date: Friday, September 21
Time: 1:00PM EST
Co-hosts: American Academy
of Pediatrics, Family Voices,
and Families Fighting Flu
How to Join: Follow
the #CDCchat
hashtag on Twitter

Special Twitter Chat
on Flu and Children

Did you miss the chat?
Visit the #CDCFluChat
hashtag on Twitter


Leadership on Twitter:

Dr. Coleen Boyle,
NCBDDD Director:

Dr. Althea Grant,
Acting Director of 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,
Epidemiologist in the Division
on Human Development
and Disability:



Join the Friends of
NCBDDD Listserv

A Note from the Director of NCBDDD

September is Sickle Cell Awareness Month


Here we are at the beginning of autumn, a time that I tend to reflect and be inspired by the terrific work that is being undertaken by NCBDDD staff and our partner organizations. While the work we do collectively is achieved year-round, it’s during health awareness observances and recognition days where often we see our greatest reach and influence.

September is National Sickle Cell Awareness Month. The observance originated in 1975 when the Sickle Cell Disease Association of America (SCDAA) began conducting month-long events to call attention to sickle cell disease and the need to address the problem at national and local levels. Dr. Althea Grant, Acting Director of NCBDDD’s Division of Blood Disorders, has been invited by the SCDAA to be the first ever speaker for the inaugural Dale Lloyd, II Lecture Series to honor the memory, spirit, dedication and passion of Dale Lloyd, II. Dale was a 2006 graduate of Lamar High School in Houston, Texas and was a well-liked and respected member of Lovett College at Rice University. In high school, he was a two-sport star who earned all-district honors in football as well as baseball. Dale was recruited by Rice University in 2006 where he played as a defensive back. His untimely death was attributed to sickle cell trait after collapsing during a football workout. Dale’s death served as the impetus for the National Collegiate Athletic Association’s Division I screening for sickle cell trait testing in all athletes. As the inaugural key-note speaker for the lecture series, Dr. Grant will discuss carrier screening as it relates to sickle cell trait.

This is a huge honor for Dr. Grant and for NCBDDD. So we can celebrate our longstanding partnership with SCDAA, the work we have all done in SCD and sickle cell trait, and the pride we feel as Althea represents our Center and the issue.

I’d like to encourage partners to continue to engage, support, and take advantage of these 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.

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

News from NCBDDD

NCBDDD Personnel Announcements

Stephanie Dulin
Ms. Stephanie Dulin has been selected to serve on a 120 day detail as the “acting” NCBDDD Deputy Director. Stephanie has 25 years of public health experience at the local, state and federal government levels. Since 2006 she has worked in the Division of Strategic National Stockpile (DSNS), OPHPR as Chief of the Community Resilience Activity Team and as the Program Preparedness Branch Chief. Prior to this she worked as a public health advisor assigned to the Arizona Department of Health Services’ Breast and Cervical Cancer Early Detection Program. Stephanie initially joined CDC in 1991 as a public health associate with the CDC’s National Center for Prevention Services, Division of STD/HIV Prevention working as a sexually transmitted disease intervention specialist. Between 1995 to 1998 she left federal service to work with the State of Florida, Department of Health, Bureau of HIV/AIDS.

Betsy Mitchell
Ms. Betsy Mitchell has accepted the position of NCBDDD’s Associate Director for Communication Science beginning October 7, 2012. Since 2009, Betsy has been a Senior Health Communication Specialist in NCBDDD’s Prevention Research Branch (PRB). In PRB, she has served as the functional communication team leader and has worked in a number of areas, including preconception health and social marketing, emergency response to the 2009 H1N1 flu, and the global initiative to eliminate neural tube defects. Prior to joining the Prevention Research Branch, Betsy was a Senior Health Communication Specialist in the Office on Smoking and Health, Health Communication Branch. There she led a variety of projects to include conducting audience research around new media communication, best practices in tobacco control and emerging tobacco issues.

60th Annual CDC & ATSDR Honor Awards – NCBDDD Award Recipients

Excellence in Epidemiology Award
Dr. Laura Schieve, with the Division of Birth Defects and Developmental Disabilities, was recently presented with the Excellence in Epidemiology Award. In several studies, Dr. Schieve examined factors to determine their influence on the recent rise in autism prevalence. She demonstrated that any substantively contributing risk factors would have had to be pervasive, strongly associated with autism, and also would have increased dramatically. Her studies hold relevance for policy-makers, parents, providers, public health, and the general public in trying to understand current autism trends.

Surveillance and Health Monitoring Award
Dr. Brian Armour and the Disability and Health Data System Development Team within the Division of Human Development and Disability were presented with theSurveillance and Health Monitoring Award.The team developed the nation’s first disability surveillance system, which is an interactive tool that yields timely, consistent, and standardized, disability-specific information across states. The system allows programs who provide health interventions for people with disabilities to develop, implement and evaluate their programs in a more timely and effective manner. The system has already begun to make a difference toward disability inclusion; for example, system information from Delaware, was used to successfully convince the state to include disability in their recently-created Office of Health Equity.

Parent Corner

Employment and Health Promotion

People with disabilities who work are more likely to be healthier and have greater self-esteem than those who don’t work. That’s really the motivation behind efforts from the Senate Health Education Labor and Pensions subcommittee on Health that held a hearing in July on the Americans with Disabilities Act anniversary. Several individuals who testified in the hearing were in their late twenties and early thirties. Senator Harkin dubbed them “the ADA generation.”

But this group of young people represents only 10% of individuals with special needs who either work or go to school. The majority of people with disabilities-90% are trying to find work. That’s 90% compared to a little over 8% in the general population. Many of those with disabilities who are working are served primarily in sheltered workshops and are paid significantly less than minimum wage.

Employment is an important issue especially for this “ADA generation.” How can we as families and partners encourage employment initiatives?

Janet Sullivan, a guest columnist for the Cedar Rapids Gazette and parent of a young man who works at Good will Industries of the Heartland explains that workers are paid by piecework – by how much work they get done. She explains that this is legal under the U.S. Fair Standards Act that also “ensures that the disabled are able to work and contribute to society to the extent that they are able.” However in many areas of this country, there are no other options for those who could be more mainstreamed into work – to those whose capacity to contribute to society is much better than piecework. It is easier to refer youth with disabilities to sheltered workshops than to work with employers to ‘hire’ persons with special needs. Some states have encouraged job shadowing or support coaches but not every person with a disability needs that assistance. Sheltered workshop are important on a continuum of service structure but they should not be the only option provided for all persons with disabilities.

NCBDDD has recognized Walgreen’s efforts to employ persons with disabilities and hopes to identify other organizations that should also be acknowledged. The Division of Human Development and Disability at NCBDDD supports health promotion programs that help individuals prevent and manage aspects of their health. Programs like “Living Well with a Disability,” an evidence-based health promotion program that works with communities to provide appropriate health care delivery for persons with disabilities. Individuals can manage aspects of their health including nutrition, fitness, talking with providers and managing stress. Health promotion programs like this are critical in promoting successful, employment opportunities.

Please send your thoughts or suggestions to We will look forward to hearing from you. We can use suggestions on who may also be interested in supporting any initiatives of this type or companies that are being supportive of these kinds of initiatives. We believe connecting with communities about these efforts are important and look forward to your input.

For your information, the Senate Foreign Relations Committee has passed the ”U.N. Convention on the Rights of Persons with Disabilities” and is waiting for a full Senate vote. The United States would be the 117th nation to approve this measure.

Julie Beckett

News from the Friends of NCBDDD

Executive Committee Nominations Now Open

Nominations for the Friends of NCBDDD Executive Committee are being accepted from September 3 – October 15, 2012. Terms of service for incoming Executive Committee members will be from January 1, 2013 to December 31, 2014. Individual and nominee must be Friends of NCBDDD members to participate in the nominations process. Please provide your name so that your membership may be verified. Nominations will be kept anonymous.

Submission: Nominations may be submitted via email to Member and Communications Chair, Adriane Griffen at Please visit the Friends website to obtain the nomination form and for additional information.

Deadline: Submissions will be accepted from Monday, September 3 to Monday, October 15, 2012.

Next Steps: Voting instructions will be shared in late October. Elections are expected to be held from Monday, November 5 to Monday, November 16, 2012. The results will be announced at the December 5 (2pm-4pm) Friends meeting being held in conjunction with the AUCD meeting in Washington, DC.

News from our Partners

OAR Announces Release of New Guidebook

The Organization for Autism Research (OAR) is pleased to announce the release of Navigating the Special Education System, the seventh guidebook in its Life Journey through Autism series. Designed to empower parents, the guide contains background information on the Individuals with Disabilities Education Act (IDEA), discusses each critical component of the IEP, reviews the timeline of services from early intervention through transition, and shares tips for being an effective advocate. It also defines common special education terminology (including related services and accommodations), gives examples of how to craft IEP goals, and lists state-specific resources that families can access.

Click here to access the full guide on the OAR website. For more information or to request a hard copy, please contact Ben Kaufman, Director, Programs and Community Outreach at (703)243-9762 or

Amputee Coalition Issues White Paper

The Limb Loss Task Force, which was convened by the Amputee Coalition, has issued a white paper, Setting New Standard for Limb Loss Prevention and Care, that sets a new standard for limb loss prevention and care.

In its report, the Task Force made two major recommendations: to partner with organizations to develop demonstration projects that seek to reduce the number of preventable amputations in the United States and to develop a media campaign to raise awareness about preventing amputations due to diabetes-related complications and vascular disease.

The Task Force, which convened February 9-12 in Washington, D.C., was comprised of experts on amputee care and rehabilitation, limb loss prevention, vascular medicine, diabetes education and management, healthcare policy, and health system administration.

“There are nearly 2 million people living with limb loss in the United States,” said Terrence P. Sheehan, MD, Amputee Coalition’s medical director and chief medical officer of the Adventist Rehabilitation Hospital of Maryland. “While not all limb loss is preventable, the leading causes of amputation – complications from diabetes and peripheral artery disease – can often be prevented through patient education, disease management and regular foot screenings.”

The Arc Receives Award from CDC for HealthMeet Project

On August 7, The Arc of the U.S. announced that it has been awarded a three year cooperative agreement through the CDC to run a new project called HealthMeet. This project aims to improve the health of people with intellectual disabilities (ID) through trainings for medical students and health professionals, community-based health assessments for individuals with ID, data collection and analysis including longitudinal health outcomes for people with ID, comprehensive information and referral, and a public awareness campaign. The project will use innovative strategies and cutting edge technology to help reduce some of the most serious health disparities people with ID face, and it will contribute to systems-change efforts in health care access. In addition to the CDC, The Arc will be working with several of its chapters with expertise in the area, including The Arc of San Francisco, The Arc of New Jersey, and Achieva, along with Therap, the Association of University Centers on Disabilities, the American Association on Intellectual and Developmental Disabilities, the National Association of County and City Health Officials, Autism Speaks, and the National Down Syndrome Congress.

Bright Futures Family Pocket Guide Now Available

Bright Futures for Families: Raising Healthy Infants, Children, and Adolescents, 2nd Ed. is now available! This colorful handy guide, written for families, by families, is built on the evidence-based information in the AAP’s Bright Futures Guidelines for the Health Supervision of Infants, Children, and Adolescents, 3rd Ed. It emphasizes and encourages building strong partnerships between families and health care professionals so integral to the Medical Home model, and recognizes the critical role that families play every day in the health and well-being of their children, including children and youth with special health care needs.

This Pocket Guide provides an overall framework for children’s good health and insight into all those who contribute to it, including age-specific information about recommended well child visits for all children. Four age/stage sections (Infancy, Early Childhood, Middle Childhood, Adolescence) include anticipatory guidance arranged around the ten Bright Futures themes (Family Support, Child Development, Mental Health, Healthy Weight, Nutrition, Physical Activity, Oral Health, Sexuality, Safety, and Community Resources). The Guide also includes 35 pages of 180 family resources—organizations, websites, and governmental sites—grouped by topic, and noting availability of Spanish resources.

Click here order copies of the Guide. For questions, please contact Melissa Vickers, Family Voices IMPACT at

Celebrate National Audiology Awareness Month and National Protect Your Hearing Month in October

Help make this October the best ever by clicking on the links below and using the available tools to promote audiology in your community. Many of the FREE downloadable promotional tools are customizable.

FASD Addressed at AAP Workshop

Alcohol use during pregnancy: It’s just not worth the risk. This is the key message resulting from a recent two-day Fetal Alcohol Spectrum Disorders (FASD) Risk Communication Workshop that took place on July 30 – 31, 2012 at the AAP headquarters in Elk Grove Village, IL.

Representatives (see photo) from the American Academy of Pediatrics (AAP), CDC, National Organization on Fetal Alcohol Syndrome, American College of Obstetricians and Gynecologists, American Academy of Family Physicians, Association of Women’s Health, Obstetric and Neonatal Nurses, Society for Physician Assistants in Pediatrics, National Association of Pediatric Nurse Practitioners, as well as practicing clinicians attended the workshop to determine new ways to communicate the dangers of drinking during pregnancy. Attendees left inspired to spread the word about the dangers of alcohol and pregnancy, made pledges, and created action steps to take afterwards, including raising awareness among organization members and making FASD a topic for education at national conventions.

The workshop was hosted, planned, and implemented by the AAP under the auspices of the Program to Enhance the Health and Development of Infants and Children, a cooperative agreement with the CDC. The FASD program is part of PEHDIC and has the goal of developing, disseminating and evaluating physician education and practice regarding FASDs. For more information, contact Faiza Khan, Program Manager at or 847/434-4924.

MDA Launching National Registry through the MDA Clinical Networkshore to London: A Unique Health Promotion Program

Muscular Dystrophy Association (MDA) is developing the first comprehensive registry for neuromuscular diseases that collects clinician-entered data through MDA’s clinical network. MDA supports multiple neuromuscular diseases and maintains funding arrangements with 200 neuromuscular specialty clinics attended by nearly 45,000 individuals annually.

The goals of the MDA registry are:

  • To gain a better understanding of the course of illness for specific neuromuscular diseases;
  • To collect data about genotype-phenotype correlations to allow for better prediction of disease progression based on genetic information;
  • To collect longitudinal patient data that will allow us to benchmark best clinical practices;
  • To use registry data as a platform to develop and implement a clinical quality improvement program for MDA clinics across the country;
  • To provide outcome-related information about MDA clinics for families seeking medical care; and,
  • To establish a database of individuals eligible for clinical trials in neuromuscular diseases and expedite research by easing the burden of clinical trial recruitment

MDA will launch a clinical registry for spinal muscular atrophy, Duchenne muscular dystrophy, and amyotrophic lateral sclerosis in approximately 25 pilot clinics in the fall of 2012 and plans to expand the registry to the other diseases and MDA clinics in future years. For more information about MDA’s National Neuromuscular Registry, contact MDA Director Clinical Programs, Jodi Wolf:

New ASD Guide for Parents and Caregivers Available

Autism Spectrum Disorders: What Every Parent Needs to Know is a go-to guide for parents and caregivers of children on the autism spectrum. From the American Academy of Pediatrics, with the guidance of autism experts Alan I. Rosenblatt, MD, FAAP, and Paul S. Carbone, MD, FAAP, father of a child with autism, Autism Spectrum Disorders delivers a comprehensive and accessible index of the most up-to-date expert medical and behavioral advice.

Autism Spectrum Disorders provides advice so parents can effectively partner with their child’s pediatrician to provide the best possible care for their children with autism. With extensive notes on treatment options, diet requirements, the role of medication, alternative therapies and community and government resources for support, Autism Spectrum Disorders teaches parents how to develop an autism management plan to maximize a child’s independence and quality of life. Caregivers will learn techniques for encouraging competence in daily living, addressing behavioral concerns from childhood through adolescence, and strengthening social skills and community connections. Interspersed throughout are first-hand accounts from fellow moms and dads of children with autism. Autism Spectrum Disorders provides parents of children with autism the essential facts and advice they need to navigate the challenging world of ASDs.

Available now at, and at bookstores in October. Click here for more AAP Autism information.

NACCHO Accepting Model Practices Applications

National Association of County and City Health Officials (NACCHO) will accept Model Practices applications Oct. 1 – Oct 31. Since 2003, NACCHO’s Model Practices Program has honored and recognized outstanding local public health practices and shared these practices through the Model Practices Database. Share what works by submitting a practice, and contribute to the overall improvement of public health through evidence-based practice methods. The Health and Disability Project wants to strongly encourage local health departments to consider applying and highlighting their work integrating and engaging people with disabilities into local public health programs, products, and services.

Five reasons to apply:

  1. Be recognized for your LHD’s success and for leading by example.
  2. Earn local and national recognition through press release templates and a spotlight in the 2013 fall issue of NACCHO Exchange.
  3. Receive a listing in NACCHO’s online Model Practices Database.
  4. Receive a coveted award and public honors, and showcase a poster of your practice at the 2013 Grand Awards Ceremony and Reception during the NACCHO Annual Conference in Dallas, Texas July 10–12, 2013.
  5. Be eligible to receive a stipend to attend the 2013 NACCHO Annual conference. (The opportunity for a stipend is available only to dues-paying members.)

Click here to submit a Model Practices application. For more information, contact the Model Practices team at NACCHO looks forward to receiving your applications.

Upcoming Webinars

APHA Disability Section Student Webinar Series

The Student Committee of Disability Section of the American Public Health Association will be conducting a new student run webinar series that provides students the opportunity to promote learning, provide an opportunity for students to present their research to a national audience, and to network with the leaders in the disability field throughout the year.

The first webinar will take place on October 2, 2012 at 2:00 pm ET and will focus on health promotion and physical activity for individuals with disabilities. The presenters and the topics include:

  • Vijay Vasudevan, PhD candidate at the University of Illinois at Chicago, will discuss the current state of questionnaires measuring barriers to physical activity and the development of a new questionnaire measuring barriers to physical activity within an ecological framework.
  • Alicia Dixon- Ibarra, PhD candidate at Oregon State University, will discuss her research on the development of a health promotion program designed for individuals living in a group home setting. She will provide an overview of the program developmental phases and focus group results from key stakeholders in the group home setting (i.e., residents with ID, support staff, and program coordinators).
  • Kerri A. Vanderbom, PhD candidate at Oregon State University, will discuss the importance of improving health for individuals with spina bifida and her research about conducting a physical activity needs assessment for adults with spina bifida, including preliminary results.

The Student Committee wishes to thank the Association of University Centers on Disabilities for hosting the webinar series and for providing live captioning and the Disability Section of APHA for funding the live captioning. Click here to register!

Time Out for Genetics Webinar: Genetics and Coding

The next Time Out for Genetics webinar, Genetics and Coding: What the Primary Care Provider Needs to Know, will take place on Thursday, September 27 from 12-12:30 pm CT. Hosted by the Genetics in Primary Care Institute, this webinar series aims to educate participants about the value of incorporating genetic medicine into primary care practice. Register now to take advantage of this free educational resource!

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.

%d bloggers like this: