Greetings from the NCBDDD Chair
It is that this time of the year to show ourselves some love! We have so much to share with each other, that we sometimes forget that this group of Friends itself is also a resource. Here are a few ideas to keep the warmth and light in our hearts:
Check out the Friends website for resources like the updated version of the Friends action plan
Reach out to your thematic area Champions with other thoughts or comments you may have.
Connect wherever you can. Use the Friends member directory to reach out to each other. The whole really is greater than the parts!
Follow each other on social media. World Birth Defects Day (#worldbdday) is coming up on March 3 and a thunderclap is in the works. A new public health and disability twitter handle, @PHis4Everyone, also launched this month.
Lastly, please let us know how your Friends experience is going! We welcome your feedback so we can better support you.
We hope you have many opportunities to share your love not just this season, but all year long.
Adriane K. Griffen, DrPH (c), MPH, MCHES
News from NCBDDD
CDC NCBDDD 2015 Research Grant Opportunities Released
Three NCBDDD RFA’s were released last week through the NCBDDD, Disability Research and Dissemination Center (DRDC) http://www.disabilityresearchcenter.com.The deadline for applications is Feb. 27th, 2015. Please circulate to colleagues who may be interested in applying and feel free to post in your newsletters, social media platforms, websites, list serves and other communication tools. These RFA’s are very appropriate for researchers, epidemiologists and public health professionals.
CDC Announcement: FY15 Operating Plan Now Available
CDC’s 2015 Operating Plan is now available. You can find all of CDC’s budget information on our website at www.cdc.gov/budget. Please contact Cristi Schwarcz (email@example.com) if you have any questions or need additional information.
February 7-14, 2015: Congenital Heart Defect Awareness Week
Did you know that about two million people live with a congenital heart defect (CHD) in the United States? Many people with a CHD need lifelong care from a congenital heart specialist doctor, even if their CHD has been repaired. As technology advances, more people born with a CHD are living longer lives. For this year’s CHD Awareness Week, CDC focuses on lifelong care of CHDs for children and adults.
March 3, 2015: World Birth Defects Day
Did you know that every year, nearly 8 million babies around the world are born with a birth defect? This amounts to about 6% of all births worldwide. To increase global awareness of these conditions, March 3, 2015, marks the first ever World Birth Defects Day. CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) and Center for Global Health (CGH) are collaborating with 11 other global organizations to promote this special day. Be on the lookout for a number of CDC activities.
SAVE-THE-DATE: CDC Public Health Grand Rounds, featuring NCBDDD
Topic: Pediatric Preparedness in Public Health Emergencies
Date: Tuesday, March 17, 2015, 1:00-2:00 p.m. ET
Location: Atlanta, Ga. Live broadcast on cdc.gov/cdcgrandrounds
Updated NCBDDD Organizational chart is now available
Webinar Save-the-Date: Preventing Hospital- Associated Venous Thromboembolism: Practical Strategies That Work
March 19, 2015
2:00 – 3:00 pm ET
Presented by Greg Maynard, MD, MSc, SFHM
Hospital-associated venous thromboembolism (HA-VTE), which encompasses deep vein thrombosis (DVT) and pulmonary emboli (PE) occurring after surgery and hospitalization, is a major source of illness, death, and healthcare cost. While some HA-VTE occurs in spite of recommended prevention approaches, there are opportunities to improve VTE prevention at every medical center. In this webinar, Dr. Maynard will discuss key issues and opportunities for reducing HA-VTE.
News from Partners
Members of the Friends of NCBDDD were able to influence key pieces of legislation in 2014. Learn more about these important bills and their potential impact.
- Achieving a Better Life Experience, or ABLE, Act-An act to amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities.
- Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education, or MD CARE Act, Amendments of 2014-Amendments to the Public Health Service Act supporting Federal surveillance, research, and dissemination of care considerations on muscular dystrophy.
- Autism Collaboration, Accountability, Research, Education, and Support (Autism CARES) Act– An act to reauthorize certain provisions of the Public Health Service Act relating to autism research, prevalence tracking, and services for children and adults.
- Newborn Screening Saves Lives Reauthorization Act of 2014– An act to amend the Public Health Service Act to reauthorize, improve and expand state newborn screening programs.
APHA Disability Section Call for 2015 Awards Nominations
Do you know someone who has made a significant contribution through scholarship, teaching, practice and/or advocacy to advance the health and quality of life of people with disabilities? Do you know an especially dedicated student? If you do, now is the time to nominate him or her for one of the 2015 APHA Disability Section Awards. Join us in honoring those who have made significant contributions to the field of disability within the context of public health. Students are encouraged to nominate a fellow student or mentor. The Disability Section offers the following awards: 1) Lifetime Achievement, 2) Allan Meyers, 3) New Investigator, 4) Student Member, and 5) Advocacy. A nomination form is attached. The deadline for nominations is 5pm ET, Wednesday, April 1, 2015. The winners will be presented with their awards at the 2015 APHA Annual Meeting in Chicago during the Disability Section Business and Awards Meeting. For further information, please contact Adriane Griffen, APHA Disability Section Awards Committee Chair, at firstname.lastname@example.org.
2015 Disability Section Awards Nomination Form
Help Spread the Word: NACCHO’s Health & Disability Fellowship
NACCHO is in search of a new Health & Disability Fellow. Last year, the Health & Disability Workgroup played an important role in recruiting the Health & Disability fellows. If you could please pass this information along and help NACCHO once again in our fellowship recruitment efforts, it would be very much appreciated.
New Affordable Care Act Fact Sheets for Families
Created by the National Center for Medical Home Implementation and the Catalyst Center, these four fact sheets highlight provisions of the Affordable Care Act which benefit children and youth with special health care needs. Each fact sheet is written in plain language, making the content easy to read and understand. Families will find information related to concurrent care; habilitative services; Health Home programs; and health insurance marketplace and Medicaid coverage for children and disabilities.
OAR Invites Proposals for its Annual Applied Research Competition
Since the inception of the annual Applied Research Competition in 2002, the Organization for Autism Research (OAR) has spent over $3.3 million in support of autism research. OAR invites researchers to submit pre-proposals for the 2015 application round by March 30, 2015.
National Survey about Siblings of Individuals with Disabilities
The Sibling Leadership Network is studying the support needs of siblings of individuals with disabilities. We invite you to complete this survey and to encourage other individuals you know to participate in the National Survey about Siblings of Individuals with Disabilities, their Support Needs, and their Families. We are looking for people to share their perspectives.
The Arc Webinar: The Prevention of Fetal Alcohol Spectrum Disorder
February 26, 2015
1:30-2:30 p.m. EST
Presented by Sterling K. Clarren, MD
Alcohol is a ubiquitous substance consumed commonly in spite of its many hazards – one of which is permanent alterations in the fetal brain leading to lifelong brain dysfunction in at least 1% of the population. Prevention means no alcohol exposure to the embryo or fetus exposure during all of pregnancy. This simple concept has turned out to be anything but simple to apply and there is no evidence of a reduction FASD over the last 40 years. This lecture will explore the most likely approaches to prevention of this important public health problem. Presented by . Sterling Claren
Busting the Congenital Heart Defect Repair Myth: Why specialized lifelong care is so important
In the United State, approximately 40,000 babies per year (1 in 110) are born with a congenital heart defect (CHD). The oft-used words in CHD care of, “fixed, repaired, and live a normal life” lead to the false assumption that surgery as a young child is a cure. Children with CHD are more likely to report worse health overall, to need more health services, and to have other health conditions.
Finding Balance: Obesity and Children with Special Needs
Children with special needs are far more likely to be overweight or obese than their counterparts according to Finding Balance: Obesity and Children with Special Needs, a groundbreaking report produced by AbilityPath.org, an online resource hub and social community for parents and professionals serving the needs of adults and children with disabilities.
Spanish Fact Sheet for the NDNRC is Now Available
Last month when we announced Fact Sheet #16 “Tips for ACA Enrollees: From Coverage to Care – Persons with Disabilities,” we indicated that it was designed to be handed out directly to consumers for their use. Given the fact that the consumer was the end-user, the NDNRC decided that we should also make this fact sheet available in Spanish. We are excited to announce that a Spanish version of the Coverage to Care Fact Sheet is now available. Special thanks to our 2014 intern, Nataly Johanson for preparing the translation and also thanks to Oliver Vera of the Oregon Health Authority for his input. Fact Sheet #16 can be found here and the Spanish version can be downloaded here.
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