October 2012

In this Issue

A Note from the Chair of NCBDDD
Mark Your Calendar

News from NCBDDD
NCBDDD Personnel Announcements

New Resources from NCBDDD

Funding Opportunity

NCBDDD’s Social Media Corner

News from our Partners
Amputee Coalition Celebrates Limb Loss Education Day Series and Grand Opening of VA Headquarters

News from Special Olympics

Preconception Care and Health Care Resource Center Launches

ASHG Elects New Officers and Board Members

ADHD Awareness Week

Upcoming Conferences and Events

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
*Registration Now Open!

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

Friends of NCBDDD Meeting
December 5, 2012
Washington, DC

Upcoming Webinars

HealthMeet™: Improving Health of People with Disabilities
October 15, 2-3 pm ET

MCH Navigator: Introducing a New Online Resource for Local Health Departments Webinar
October 23, 3-4 pm ET

Friends of NCBDDD Webinar
November 7, 3-4 pm ET

Time Out for Genetics:
Top 10 Genetic Resources for Pediatric Primary Care Providers
October 25, 12-12:30 pm CT

Funding Opportunities

FEMA Community Resilience Innovation Challenge
*Deadline: October 26, 2012

AAHD Scholarship Program
*Deadline: November 15, 2012

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 September 14, 2012. Photos and web links are encouraged!

NCBDDD’s Social Media Corner

Please join us!
Social Media Events – October


Upcoming Twitter Chats!

Topic: Newborn Screening
Date: Friday, October, 12
Time: 1:00PM ET
Co-hosts: Baby’s First Test
How to Join: Follow
the #NBSchat
hashtag on Twitter

Topic: Blood Disorders
Date: Thursday, October, 18
Time: 1:00PM ET
Co-hosts: March of Dimes
How to Join: Follow
the #PregnancyChat
hashtag on Twitter

Upcoming Facebook Chat!

Topic: Sickle Cell Disease
Date: Monday, October 15
Time: 5:00PM ET
Co-hosts: March of Dimes
How to Join: click here

Leadership on Twitter:

Dr. Coleen Boyle,
NCBDDD Director:

Dr. Althea Grant,
Acting Director of the
Division of Blood Disorders: https://twitter.com/

Dr. Scott Grosse,
Research Economist in the
Division of Blood Disorders: https://twitter.com/

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

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



Join the Friends of
NCBDDD Listserv

Greetings from the Chair of NCBDDD

Mark Your Calendar!
Roberta S. Carlin, MS, JD, Executive Director, AAHD

Roberta S. Carlin, MS, JD, Executive Director, AAHD

The Friends of NCBDDD Executive Committee (EC) has been busy working to develop an integrated communications strategy for the Friends of NCBDDD to better serve our members and keep you informed of NCBDDD initiatives, priorities, and activities. To accomplish this goal, the EC has initiated regularly scheduled webinars, and will be resuming interactive membership calls and an annual in-person meeting with NCBDDDD Leadership. These additional activities will complement the Friends of NCBDDD monthly newsletter, list-serve posts, and website resources. We are excited about implementing these changes and look forward to hearing your feedback.

To launch this effort, the Friends of NCBDDD will be hosting a webinar on November 7, 3-4 pm EST, with NCBDDD Director Dr. Coleen Boyle and other members of her leadership team. The webinar will focus on two topics: 1) highlights from the recent progress report provided to CDC Director Dr. Tom Frieden, and 2) highlights from recent stakeholder meetings that are helping the Center advance the science on key priorities or focus areas. The webinar also will include time for a Q&As from the Friends. You may register at https://www1.gotomeeting.com/register/903184017.

In addition, in an effort to increase information sharing and learn from each other’s successes, the EC invites Friends to share progress that you’re making as well. Please email me (rcarlin@aahd.us) if you’ve recently held a meeting engaging external partners and/or stakeholders to move your work forward and would be interested in sharing an overview with the Friends on this webinar.

The Friends of NCBDDD EC also is excited about resuming the annual in-person meeting for all Friends of NCBDDD members and those interested in joining the Friends. The meeting will be held on December 5, 2-4 pm, at the Washington Hilton (1919 Connecticut Avenue NW, Washington, DC). Friends are encouraged to bring staff and/or board members from their organizations to the annual meeting.

The theme of this year’s meeting is “Making the Connections” and will use a town hall format to facilitate NCBDDD Leadership and Friends of NCBDDDD members learning how they can effectively make connections – to partner, collaborate, and support each other in moving our shared priorities forward. As part of this discussion, Dr. Boyle and her leadership team will provide a review of key accomplishments achieved in 2012 and respond to questions from members [Note: we will be soliciting questions from members prior to the meeting]. The meeting also will allow participants to meet current Friends of NCBDDD EC members and welcome the newly elected Friends of NCBDDD EC. An agenda will be distributed in November, but feel free to email me if you have any additional ideas or thoughts for the annual meeting.

On behalf of the Friends of NCBDDD EC, we look forward to your participation in the upcoming events and planning for 2013!

Best regards,

Roberta Carlin, MS, JD
Friends of NCBDDD Chair

News from NCBDDD

NCBDDD Personnel Announcements

LCDR Kinzie Lee
Congratulations are in order for LCMR Kinzie Lee on her recent UPSHS Achievement Medal for “Recognition of Outstanding Dedication and Services at the Acting Deputy Associate Director of Policy, NCBDDD.”

LCDR Lee was specifically recognized for:
– her guidance and coordination of congressional work at the Center around autism and congenital heart defects;
– knowledge and insight into issues management around a number of intra-agency Delegations of Authority;
– mentorship of junior staff;
– insight and counsel on the organization of the office, as well as key input into NCBDDD’s first ever Partnership Engagement Plan; and
– leadership in developing critical analyses on the budget formulation.Please join NCBDDD in congratulating LCDR Lee on this important recognition.

CDR Karon Abe, PhD
NCBDDD is pleased to welcome CDR Karon Abe, PhD to the Division of Blood Disorders. Karon is currently serving a 120 day detail as Acting Chief of the Epidemiology and Surveillance Branch.

Karon Abe received her B.A. in Animal Physiology from the University of California, San Diego and a Ph.D. in Pharmacology at the University of North Carolina, Chapel Hill. In 2002, she began working at CDC as an ORISE fellow in the National Center on Birth Defects and Developmental Disorders after finishing a 2-year post-doctoral fellowship at Harvard in Boston, Massachusetts. In 2003, she joined the USPHS as an Epidemic Intelligence Service (EIS) Officer and worked at the Georgia Department of Human Resources in the Division of Public Health (GDPH). At the GDPH, Karon was able to lead infectious disease investigations that led to changes in infectious control procedures and had the opportunity to publish various analyses in injury and chronic disease. In 2005, Karon took an epidemiologist position at CDC in the Division of Reproductive Health, Maternal and Infant Health Branch, working in the field of preterm birth, genetics, and vitamin D. In 2011, she became Team Lead of the Preterm Birth/Infant Health Team focusing on improving preterm surveillance as well as understanding the etiology and the racial disparity in preterm birth. The preterm birth initiatives include biological-based research projects and projects that support state programs and collaboratives. Karon brings expertise in maternal child health, molecular biology, and her experience with state-based programs. Karon is also a Commander in the USPHS. Please join NCBDDD in welcoming CDR Abe.

LT Meredith Pye:
The Commission Corps Awards Board met to review and approve Cycle III Awards on September 20th and LT Pye’s USPHS Citation Award for providing scientific excellence in performance of molecular laboratory techniques was approved! It’s very exciting to see dedication and excellence rewarded in NCBDDD’s junior officers. NCBDDD thanks LT Pye for her hard work and continuing commitment to NCBDDD’s Division of Blood Disorders. Below is a list of the impact and conclusions from the award nomination.

– LT Pyle’s energies and determination during this project enabled the laboratory to produce high quality results consisting of more than 10 million data points during a very short window.
– The exceptionally short turnaround time significantly reduced the delay in the project’s completion date and allowed the timely completion of this section of the project.
– Through LT Pyle’s thoughtful and dedicated approach, she efficiently and meticulously processed the blood samples for high quality RNA extractions in a very short period of time and moving the project forward by weeks

LT Pyle brought a significantly delayed and highly technical project to a timely completion through her intense scientific commitment. LT Pyle’s scientific excellence in performing molecular laboratory techniques furthered the identification of those at risk for VTE. Therefore, LT Pyle is highly deserving of the USPHS Citation.

New Resources from NCBDDD

Autism Case Training: Free Online CME, CNE, CEU now available from CDC
The Autism Case Training online curriculum covers the fundamental components of identifying, diagnosing, and managing autism spectrum disorders. Three modules, which can be taken separately or together, are based on real-life scenarios and include up-to-date information, illustrative videos, and pertinent references and resources. Free continuing education credits (CME, CNE, and CEU) are available for each of the modules.

Course content comes from the Autism Case Training in-class curriculum, written by developmental-behavioral faculty and fellows from 10 Maternal and Child Health Bureau Developmental-Behavioral Pediatrics Fellowship Training Programs and the Centers for Disease Control and Prevention (CDC). It has undergone external review by peers and field validation.

Click here for the online Autism Case Training curriculum.
Click here for the Autism Case Training in-class curriculum.

New Educational Material on Diabetes and Pregnancy
NCBDDD announces a new educational material for general audiences on diabetes and pregnancy, “Pre-Existing Diabetes and Pregnancy. Potential Effects of Uncontrolled Diabetes Before and During Pregnancy.” The pdf can be found on http://www.cdc.gov/NCBDDD/pregnancy_gateway/diabetes-types.html and is available for downloading and printing. We hope this material is helpful for your educational efforts. Please share with your constituents and let us know what you think.

Funding Opportunity

FEMA Announces 2012 Community Resilience Innovation Challenge
FEMA recently announced a new funding opportunity to build local resilience, through a Whole Community approach, in communities across America: the Community Resilience Innovation Challenge. The opportunity is provided through the Rockefeller Foundation and FEMA and will be administered by the Los Angeles Emergency Preparedness Foundation who will act as a third-party intermediary to encourage local communities to engage in creative activities that enhance disaster resilience. Funding levels will range, with a maximum award of $35,000, and applications are open to most local, state, and tribal agencies and governments; business entities; associations; organizations and groups. Submissions will be accepted through October 26. Additional information on the Challenge program criteria and application process can be found at www.fema.gov and www.ResilienceChallenge.org.

NCBDDD’s Social Media Corner

Can We Chat?
As you may have noticed, NCBDDD has gone social! We’ve been using social media to get the word out about the conditions we study and the programs we support. Through our Twitter profiles and the agency’s Facebook accounts, we’re able to provide stakeholders with information on breaking news when it happens and make important public health information more accessible – as was the case with the recent meningitis outbreak. But, for us, social media channels also offer a unique opportunity for us to hear directly from you, our partners, and from the constituents you represent. Over the past year, we’ve partnered with you to conduct over a dozen Twitter Chats and Facebook chats reaching millions of people and engaging in conversations about health issues that matter.

Like you, we recognize the power of social media. The days of simply posting resources to our website and waiting for users to find them are a thing of the past. We’d like to use this space, located on the left hand column in our monthly newsletter, to let you know about upcoming opportunities to participate in your social media plans. If you are planning a chat, please let us know and we’ll be happy to share the invitation with other partners. If you have a topic that you’d like to propose for a future chat with NCBDDD, please email Conne Ward Cameron directly at goa4@cdc.gov.

News from our Partners

Amputee Coalition Kicks-Off Limb Loss Education Day Series and Celebrates Grand Opening of VA Headquarters

The Amputee Coalition kicked-off its Limb Loss Education Day event series and celebrated the grand opening of its Manassas, VA headquarters on Saturday Sept 29, 2012. Over 80 people attended the event, which featured an adaptive rock climbing clinic and brief remarks from local dignitaries and Coalition staff.

“As a national organization, being in the Greater D.C. area will allow us more opportunities to be present for national policy issues, coalition building, and working with partners,” said Marshall Cohen, the Amputee Coalition’s Board Chair.

Six additional Limb Loss Education Day events will be held throughout the country. Each event will feature an adaptive sport and recreation clinic as well as educational programming designed to help people with limb loss lead a healthier lifestyle.

“We are very excited to bring Limb Loss Education Day event’s to local communities and provide them at no charge to amputees and their families,” said Kendra Calhoun, president & CEO of the Amputee Coalition. A full list of Limb Loss Education Day events is available on the Amputee Coalition’s website.

The Amputee Coalition’s Knoxville, TN office will continue to house the National Public Health Practice Resource Center for Limb Loss.

News from Special Olympics

Special Olympics Receives New Grant

Former President William J. Clinton has announced that businessman and philanthropist Tom Golisano will provide $12 million to expand Special Olympics’ health-related services to people with intellectual disabilities – one of the largest and most medically underserved disability groups in the world – which will allow for the launch of a new Healthy Communities initiative. Healthy Communities’ goal is to achieve improved health outcomes for people with intellectual disabilities with the ultimate goal of ensuring that all are receiving health services and are able to reach their full potential. It will expand services to more athletes, increase partnerships with local organizations, expand the use of technology, and promote awareness of the health difficulties facing people with intellectual disabilities.

The commitment was made at the opening of the 2012 Clinton Global Initiative Annual Meeting. Click here to find the full press release and event pictures!

Essilor and Special Olympics Renew Partnership

On Sept 13, Essilor International, the official global supplier of ophthalmic lenses to the Special Olympics Lions Clubs International Opening Eyes program since 2002, announced a renewal of its partnership with the program for the next decade. The announcement took place at a Special Olympics event honoring Essilor International chairman and CEO Hubert Sagnieres. A reception hosted by Special Olympics was held at the National Museum of the American Indian in Washington, DC. Click here to find more information about the partnership and here to find photos from the event.

Preconception Care and Health Care Resource Center Launches

The Preconception Health and Health Care Resource Center is a comprehensive web directory of hyperlinks to tools and resources designed to advance the health of men and women of reproductive age. Materials and strategies are grouped into four categories: 1) health education materials for women and men; 2) clinical strategies and model programs; 3) policy strategies and resources; and 4) state and local strategies and model programs. This resource was developed by the Association of Maternal & Child Health Programs, the Association of State and Territorial Health Officials, the Centers for Disease Control and Prevention, CityMatCH, Johnson Group Consulting, Inc., the National Association of County and City Health Officials, the National Preconception Health and Health Care Initiative, and the Center for Maternal and Infant Health at the University of North Carolina, Chapel Hill.

ASHG Elects New Officers and Board Members

The American Society of Human Genetics (ASHG) congratulates Cynthia C. Morton, PhD, on her election as the 2014 President of ASHG. Dr. Morton is William Lambert Richardson Professor of Obstetrics, Gynecology and Reproductive Biology and Professor of Pathology at Harvard Medical School. She has served as the Director of Cytogenetics at the Brigham and Women’s Hospital and a Senior Associate Member of the Broad Institute of MIT and Harvard.

ASHG also congratulates the following officers on their election to the ASHG Board of Directors:
– Helen H. Hobbs, MD, Howard Hughes Medical Institute Investigator and Professor of Internal Medicine and Molecular Genetics at the University of Texas Southwestern Medical Center.
– Sally A. Camper, PhD, Professor and Chair of Human Genetics and Professor of Internal Medicine at the University of Michigan.
– Han G. Brunner, MD, PhD, Professor of Medical Genetics and Head of the Department of Human Genetics at the Radboud University Nijmegen Medical Centre.Terms for all newly elected officers begin in January 2013.

ADHD Awareness Week

The Many Faces of ADHD is the theme for this year’s ADHD Awareness Week, which takes place October 14-20, 2012. The mission of ADHD Awareness Week is to educate the public about ADHD by disseminating reliable information based on the evidence of science and peer-reviewed research. The many faces of ADHD reflects the growing awareness of ADHD, a neurological disorder that is not confined to any one age group or ethnicity. It affects millions of children, adolescents, and adults in the US. CHADD and the National Resource Center on ADHD are part of the national coalition providing science-based information about all aspects of ADHD. Find more information at: http://www.adhdawarenessweek.org/.

Upcoming Webinars

HealthMeet™: Improving Health of People with Disabilities

Join The Arc staff on Monday, October 15, from 2:00-3:00 pm ET to find out more about the new HealthMeet™ project, funded through a 1 million dollar cooperative agreement from the Centers for Disease Control and Prevention. Find out more about health disparities that impact people with intellectual disabilities and how The Arc is working to reduce these obstacles, educate people about healthy decisions and habits, and identify new ways to improve the quality and accessibility of health care services. Join us to find out more about this project and how you can contribute to this exciting new initiative! Reserve your seat now!

Approaches to Training Healthcare Providers on Working with Patients with Disabilities

This webinar is co-sponsored by AUCD’s Health and Disability Special Interest Group and the Alliance for Disability in Health Care Education. This webinar is scheduled on Tuesday, October 23, from 12:00-1:30 pm ET. Presenters will share their approaches to “making the case” for, designing, and implementing training for healthcare providers on working with patients with disabilities. Click here to register!

MCH Navigator: Introducing a New Online Resource for Local Health Departments

The Maternal and Child Health Bureau’s MCH Navigator is a new learning portal that facilitates use of existing open-access training and is organized in areas consistent with nationally endorsed public health and MCH leadership competencies. This webinar will occur on Tuesday, October 23, from 3:00-4:00 pm ET. It will include a live demonstration of the website and discuss how local health departments can use this resource. Explore the MCH Navigator before the webinar by visiting www.navigator.mchtraining.net. To register for this webinar, click here!

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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