August 2016

♦ News from NCBDDD Executive Committee

♦ Saving Babies

♦ Helping Children

♦ Protecting People

♦ Improving Health

♦ News from NCBDDD

♦ Connect with Us

♦ Submit Here

News from NCBDDD Executive Committee
All-Friends Quarterly Check In

Make plans to join our next quarterly check in. All members of the Friends are invited. We’ll feature updates from the Improving Health thematic area with short updates from all other areas.Register_Button.png

Including People with Disabilities: Public Health Workforce Competencies

PrintThe Association of University Centers on Disabilities (AUCD) would like to announce the release of the Including People with Disabilities: Public Health Workforce Competencies. The Competencies outline recent advances in knowledge and practice skills that public health professionals need to include people with disabilities in the core public health functions – Assessment, Policy Development and Assurance. The Competencies have been developed by a national committee comprised of disability and public health experts. Read more…

Communications Committee Update

The Communications Committee will be presenting on the Awareness campaign and tools on the September Quarterly call.

The goals of the Awareness program are to:

  • Increase awareness of NCBDDD at CDC and public health agencies
  • Increase communication with others beyond members of the Friends
  • Increase awareness of how your organization plays a role in public health
  • Increase the visibility of the group, highlight programs, and to support the mission of group

Read more…

Saving Babies
Fragile X Syndrome (FXS) Myth Buster Handout

AAP logoWe are pleased to announce the launch of the new FXS Myth Buster handouts recently published in AAP News, the monthly magazine of the American Academy of Pediatrics (AAP). Designed to address misperceptions about fragile X syndrome, one version of the FXS Myth Buster handout has myths and facts written for pediatricians, and a second version has these same myths and facts written for pediatricians to give to their patients’ families. Read more…

 

Zika: Take Grassroots Actions

pregnant1Zika has now been diagnosed in over 1,000 pregnant women in the US and its territories and continues to rise sharply.  The latest numbers are here. CDC issued new guidance recently recommending that health care providers assess the possibility of Zika infection for every pregnant woman at every prenatal visit. Babies born to mothers infected with Zika may be born with microcephaly, other forms of brain damage, experience seizures, developmental delays, hearing and vision issues, and problems with feeding, so developmental monitoring and acting early on concerns is extremely important. While scientists are working tirelessly on a Zika vaccine, it is highly unlikely that a vaccine could be developed, tested, and make available to the public before 2018 at the earliest. Prevention activities are critical now to protect pregnant women and their infants. Remind your members, colleagues, and neighbors to remove any standing water and monitor any place water accumulates as  Zika mosquitos can reproduce in very little water. This includes buckets, bird baths, garbage cans, gutters, ditches, puddles, pet bowls, toys left outside, or even an area as small as bottle cap. Prevention and education resources are critically needed to avert a wave of severe birth defects caused by Zika. The March of Dimes and partners have formed a Zika coalition to address these concerns and educate Congress. For more information or to join, contact Jaimie Vickery at JVickery@marchofdimes.org.

 

Protecting People
August Funding Alert: Improving the Health of People with Mobility Limitations and Intellectual Disabilities through State-based Public Health Programs

HHS_CDC_Logo

NCBDDD’s Division of Human Development and Disability, and Disability and Health Branch are pleased to announce the new awardees of CDC-RFA-DD16-1603: Improving the Health of People with Mobility Limitations and Intellectual Disabilities through State-based Public Health Programs (known as State Disability and Health Programs). Read more…

Public Health Webinar Series On Blood Disorders – Voices of 5,000+ Patients: The First National Survey on Experience of Care at U. S. Hemophilia Treatment CentersGUEST

viles-blood-400px

Shared decisionmaking and a positive patient/healthcare provider relationship foster patient satisfaction, which is a core patient-reported outcomes measure that is critical to clinical care, quality, and research. Historically, U.S. Hemophilia Treatment Centers (HTCs) have individually assessed patient satisfaction. However, a national, standardized survey to enable comparison of HTC characteristics, trends over time, and variation by region was lacking. To remedy this information gap, in 2015 the U.S. HTC Network devised and conducted the first ever national HTC patient satisfaction survey. Read more…

CDC and NBCA Kick-Off Next Phase of Stop the Clot, Spread the Word™

FB Image for STC-STW-HThe National Blood Clot Alliance (NBCA) and the Centers for Disease Control and Prevention (CDC) kicked off the next phase of their widely acclaimed Stop the Clot, Spread the Word™ campaign on August 9, with an important new focus on blood clot risk reduction among hospitalized patients. While anyone can develop blood clots, people who are currently or recently hospitalized, recovering from surgery, or receiving cancer treatment are at increased risk. This year’s Stop the Clot, Spread the Word™ campaign has expanded to include a spectrum of new digital communications vehicles specific to hospitalization and blood clot risks, which can all be viewed on the campaign website. Read more…

Research Summary: The Role of Happiness in People Living with Chronic Pain

HappinessThe University of Washington, Healthy Aging Rehabilitation Research Training Center (RRTC) has written a series of Factsheets and Plain Language Research summaries and they have just released the newest Plain Language Research Summary: “The Role of Happiness in People Living with Chronic Pain”.  The Plain Language Research Summary is available at  http://agerrtc.washington.edu/node/225

Adult Congenital Heart Association Webinars

acha

Keep on Moving:  Physical Activity and Cardiac Rehab in the Adult with CHD
Thursday, August 25, 2016
7:00 pm – 8:00 pm ET

Do you equate physical activity and exercise as the same thing? If so, you want to attend this webinar and learn the difference.  Do you understand why you get short of breath during exercise?  Dr. Michael Earing, noted ACHD cardiologist, will also explain this.  In addition, he will help you understand how your functional capacity and quality of life improves with training and physical rehabilitation. Read more

Register_Button

achaEmpowering Patients to Talk to their Health Care Team about Research
Thursday, September 8, 2016
7:00 pm – 8:00 pm ET

Do you equate physical activity and exercise as the same thing? If so, you want to attend this webinar and learn the difference.  Do you understand why you get short of breath during exercise?  Dr. Michael Earing, noted ACHD cardiologist, will also explain this.  In addition, he will help you understand how your functional capacity and quality of life improves with training and physical rehabilitation.  Read more…

Register_Button

 

helpingChildren@2x_bacgroundHelping Children
Personnel Announcement

NicoleDowling

We are pleased to announce that Dr. Nicole Dowling has been named Chief, Developmental Disabilities Branch in the Division of Congenital and Developmental Disabilities. Dr. Dowling has served as acting DDB chief since July of 2015. Prior to her current position, she was the Division’s Associate Director for Science. Read more…

 

Improving Health No BackgroundImproving Health
Community Leadership Training

HHS_CDC_LogoLast year a group of nearly 50 leading scientists, health professionals and providers, and children’s health and disabilities advocates (including The Arc) came together out of concern over the growing link between toxic environmental chemicals and neurodevelopmental disabilities. This month, we issued a consensus statement under the banner of Project TENDR: Targeting Environmental Neuro-Developmental Risks. Read more…

Updated Health and Disability Toolkit in NACCHO’s New Toolbox Portal

toolboxEarlier this year, the National Association of County and City Health Officials (NACCHO) launched an updated and expanded Health and Disability Toolkit as a part of its free, online Toolbox. The Toolkit currently has 181 resources, all of which can be accessed by visiting the new NACCHO Toolbox portal, and selecting “Health and Disability Toolkit” in the toolkit drop down menu. The Toolkit includes resources developed by NACCHO’s Health and Disability team and the National Health and Disability Workgroup; NACCHO Model Practices; and model plans created by local health departments. Read more about the contents and development of the toolkit by visiting NACCHO’s Healthy People, Healthy Places blog, here.

NACCHO Voices Blog: Communicating Effectively with People Who Have Disabilities

NACCHO LogoThis Spring, the National Association of County and City Health Officials (NACCHO) hosted two fellows supporting the organization’s Health and Disability team. One of these fellows, Meredith Williams, put together a highly informative blog on effective communication strategies and resources when engaging individuals with disabilities. The blog, featured on the NACCHO Voice, includes insight on barriers to reaching the disability community during emergencies, helpful tools for local health departments to address those challenges, and other resources. Read the full blog, here.

NACCHO Health and Disability Publications

healthanddisabilityIn June 2015, the National Association of County and City Health Officials (NACCHO) released five new health and disability resources to support local health departments (LHDs) and their partners in promoting inclusion within the communities they serve. As a direct result of the NACCHO Healthy and Disability program, supported by the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, three new fact sheets and two model practice stories featuring disability related efforts of two health departments were developed and are available for download in the NACCHO Bookstore. Read more and access all five resources by visiting NACCHO’s Preparedness Brief blog, here.

 

News from NCBDDD
Executive Committee
Champions
How to Add NCBDDD Connect Badge to E-mail Signature:
  1. To add the “Connect with NCBDDD” button to an e-mail signature follow the steps below:
  2. Open Microsoft Outlook
  3. Go to File > Options > Mail > Signatures
  4. Right click the graphic below and select “copy”
  5. Paste the graphic into your desired signature in the “Edit signature” field
  6. Click on the graphic and then click the hyperlink icon in the top right of the “Edit signature” field
  7. Be sure http://www.cdc.gov/ncbddd/connect/index.html is listed in the URL box and hit OK

badge

Submit Here
News items may be submitted for consideration via email to acostalas@aucd.org. 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 Anna Costalas by 9/9/2016. Photos and web links are encouraged!!Submit_Button
  • AUCD | 1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910
  • 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 Anna Costalas.

 

 

%d bloggers like this: