Greetings from the Friends of NCBDDD
Chair
Dear Friends,
August means the end of the summer and the beginning of fall – one last trip to the beach, getting children back to school and getting ready for all of the meetings that we seem to have each fall!
Here are some strategies to stay on top of things (and still be able to carve out a little time for fun!):
Stay connected with social media
Follow NCBDDD on Twitter @CDC_NCBDDD. NCBDDD has streamlined its Twitter strategy from five handles to one. This will result in increases in followers and engagement. The more followers NCBDDD has, the more potential exposure there is to the topic areas that matter to all of us as Friends! You can also follow me @adrianegriffen for Friends news and public health updates.
Use your Champions to stay connected with all those meetings
Are you going to be at DaSY? How about APHA? Oh, are you presenting at the regional consortium meeting? How can you be at all of these different meetings that all happen within a few weeks of each other and stay on top of everything in your day to day work?!?! Here’s an idea – use your Champion to stay connected when life gets busy. A full list of Champions is available on the Friends home page at www.friendsofncbddd.org. Champions will be your conduit to the Friends Executive Committee and leadership of the Center, so please reach out to the Champion in your particular focus area to share any updates or ideas you may have.
Find a Friend on the listserv – you are not alone
You are receiving this e-newsletter because you are a member of a dynamic coalition of like-minded, engaged professionals and families in the areas of blood disorders, birth defects and improving the health of people with a disability across the lifespan. If you are in need of a piece of information or a resource, chances are that one of your colleagues will be able to help. Why not solicit their feedback and advice with a quick post to our Friends of NCBDDD listserv at friendsncbddd@lyrisvs.aucd.org.
Many thanks for the communications committee’s ongoing efforts to develop a streamlined approach that helps to keep you connected with each other! A subcommittee of this group is meeting later this month to make plans for an in person Friends meeting later this fall. Stay tuned for details!
Last but not least, I wanted to let you know that August is a special month as we note 30 years of CDC service from NCBDDD’s Director, Dr. Coleen Boyle. Friends, let’s celebrate by sharing our good wishes for continued success by tweeting an update that includes the Center’s new handle (@CDC_NCBDDD).
Here’s to a happy end of summer and a productive start of the fall!
Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair
Parent Corner
Roxanne Romanick is a parent with North Dakota Family Voices. Please find her inspiring story below.
Julie Beckett
Roxanne’s Story:
Two years I had something phenomenal happen to me…I had reason to remove my bike from the rafters of our garage where it had hung for at least five years without any activity. I became a bike rider again. Why that happened is an even better story…My thirteen year old daughter with Down syndrome became an independent two-wheel bike rider. Suddenly we had a physical activity that we could share and I had a very motivating reason to ride my own bike.
Elizabeth had attended a Lose the Training Wheels Bike Camp in 2005 when she was 6 years old; however she never quite got the hang of trying to ride and we never could improve her confidence enough to get her motivated and enthusiastic about riding. So the years passed and when she hit her teenage years, we decided that if we were going to get this accomplished, we’d need some help, so we started to seek out Lose the Training Wheels camps across the country.
Read more…
News from NCBDDD
Dr. Georgina Peacock Named Acting Director, NCBDDD’s Division of Human Disabilities and Development
 Please join NCBDDD in welcoming Dr. Georgina Peacock as the acting director of the Division of Human Development and Disability. Dr. Peacock will be joining the division August 24 serving in a 120 day detail while we continue our efforts to recruit and hire a permanent director.
Read more…
Dr. Shannon Griffin-Blake Named New Branch Chief for the Disability and Health Branch
 Dr. Shannon Griffin-Blake was recently named the new Branch Chief for the Disability and Health Branch, Division of Human Development and Disability (DHDD) at CDC’s National Center on Birth Defects and Developmental Disabilities. She will provide leadership, strategic management and operational experience to CDC’s disability and health portfolio, which includes, but is not limited, to 18 funded state programs, five national public health practice and resource centers, and disability research and epidemiology expertise.
Read more…
Now Live! Disability and Health Data System (DHDS) Tutorial Videos
CDC Division of Human Development and Disability (DHDD), in collaboration with the National Association of County & City Health Officials (NACCHO), have created four Disability and Health Data System (DHDS) tutorial videos. The tutorial videos teach users how to use the web tool to access data from the Behavioral Risk Factor Surveillance System (BRFSS) about the health of adults with disabilities. These videos also teach users about the data tool and how to use three of its features: interactive maps, customizable data tables and state profiles. DHDS is an online interactive tool that provides instant access to state-level, disability-specific health data. Users can customize the disability and health data they view, making it easy to identify health disparities between adults with and without disabilities.
The videos are available on the Disability and Health Website: http://www.cdc.gov/ncbddd/disabilityandhealth/dhds-materials.html
Stop the Clot Forum
 On August 28, 2014, the National Blood Clot Alliance will host its next “ Stop The Clot” forum in Rochester, New York. This educational forum is an interactive program that provides basic information about blood clots, signs and symptoms, risk factors, prevention and treatment. The “Stop the Clot” forums provide a venue to share up-to-date information to people whose lives are affected by blood clots and clotting disorders with experts in the field. Attendees will be better equipped to make decisions about their health, communicate with their health care providers and cope with living with blood clots and clotting disorders.
The guest speaker for this event will be Peter Kouides, MD. Dr. Kouides is the Medical & Research Director at the Mary M. Gooley Hemophilia Center, based in Rochester, New York. For more information about this event, please contact Judi Elkin at jelkin@stoptheclot.org.
CDC and NCBDDD Honor the 24th Anniversary of the Americans with Disabilities Act
July 26th marked the 24th Anniversary of the Americans with Disabilities Act of 1990 (ADA). The National Center on Birth Defects and Developmental Disabilities (NCBDDD) joined in recognizing ADA as a platform for the inclusion of people with disabilities in federal efforts related to health and health care. Inclusion of people with disabilities into mainstream health programs and services can improve the health of Americans living with disabilities across their lifespan, allowing them to reach their full potential, experience independence and contribute to their communities.
In honor of the ADA anniversary, NCBDDD’s Division of Human Development and Disability released a CDC Public Health Matters Blog, “ADA Anniversary: Including People With Disabilities in Public Health,” as well as an internal agency-wide informational posting for CDC staff titled, “The Americans with Disabilities Act: A Platform for Healthy Living.”
New 2014 Disability and Health Data System (DHDS) Updates
CDC, NCBDDD’s Division of Human Development and Disability announces new features and updates to Disability and Health Data System (DHDS), an online interactive tool that provides instant access to state-level health data about adults with disabilities. New 2014 features of the data tool include 2012 Behavioral Risk Factor Surveillance System (BRFSS) data, an interactive map for mobile devices, dual area profiles, single year indicators stratified by demographic groups, P-values on disability disparity estimates and changed indicator analysis to match current recommendations.
Visit DHDS at http://dhds.cdc.gov to view the recent 2012 data, updated DHDS Fact Sheet, updated 2014 Update Notes, and updated Health Indicator List on the health of adults with disabilities in your health program area or your state. Please send questions to dhds@cdc.gov.
Read more…
News from our Partners
New Resources for Including People with Disabilities 
The National Association of County and City Health Officials (NACCHO’s) Health and Disability Program has developed two new resources to help health departments think through the best strategies for including people with disabilities in public health programs, policies and services. People with disabilities are more likely to experience inequities in their health status when compared to people without disabilities and they are less likely to be included in emergency preparedness planning. Log in to NACCHO’s Bookstore to download free guides: “Strategies for Successfully Including People with Disabilities in Health Department Programs, Plans, and Services” and “Directory of Community-Based Organizations Serving People with Disabilities.” Contact disability@naccho.org with questions.
Dr. Robert L. Brent Receives 2014 Distinguished Public Service Award
Dr. Robert L. Brent received the 2014 Distinguished Public Service Award from the Health Physics Society (HPS) at the annual meeting held on July 15, 2014 in Baltimore, Maryland. This award and associated memorizations are intended to acknowledge outstanding contributions to the profession of health physics while in public service or service to the general public that significantly contributes to the relationship between the public and the health physics profession. This is one of the meaningful awards given by the HPS and so far only four persons have received it.
PEHDIC Hosting New Webinar Series on Early Identification of Motor Delay
 The Program to Enhance the Health and Development of Infants and Children (PEHDIC), within the American Academy of Pediatrics, is hosting a new webinar series titled, “Early Identification of Motor Delay.” The webinar series will provide detailed guidance and resources to clinicians caring for children with Neuromotor delays. The next webinar cover the care coordination and co-management of children who have or may have a Neuromotor diagnosis. It will occur on August 26 at 3:00pm ET. Register here! Click here to read more about the webinar series.
Maternal and Child Health Library History Collection Update
The Maternal and Child Health (MCH) Library at Ge orgetown University has updated its History Collection with new items to increase access to important historical resources. Please share this information among memberships, staff and library patrons. These resources include an index to the William McConway Hiscock Collection on Medicaid’s Early and Periodic Screening, Diagnostic and Treatment (EPSDT) Program; reports from the U.S. Children’s Bureau statistical series on child welfare, maternal and child health and crippled children’s programs, juvenile courts, infant and childhood mortality, dated 1947-1971; historical MCH posters from events and public education campaigns; and new titles on newborn screening, getting to know Title V (for families), and caring for infants from 1935 to the present.
Please visit http://www.mchlibrary.info/history/ to read these and other resources. Contributions to the library are also welcome.
Read more…
ACHA Webinar on Eisenmenger Syndrome
 Join this webinar from the Adult Congenital Heart Association (ACHA) to hear Dr. Naser Ammash, noted ACHD cardiologist and professor of medicine at the Mayo Clinic, talk about living well with Eisenmenger syndrome. Audience members will learn more about ways to help improve quality of life and outcomes. Click here to register!
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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 Melody Imoh.
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