April 2015

April 2015

♦ Saving Babies

♦ Protecting People

♦ Helping Children

♦ Improving Health

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Saving Babies
Twitter Chat on Alcohol Use During Pregnancy and Fetal Alcohol Spectrum Disorders

In recognition of Alcohol Awareness Month, please join NCBDDD April 23 from 2:00-3:00pm Eastern for a Twitter chat on alcohol use during pregnancy and fetal alcohol spectrum disorders. The chat will be hosted by the National Organization on Fetal Alcohol Syndrome (@NOFAS_USA) and co-sponsored by CDC/NCBDDD (@CDC_NCBDDD) and the National Council on Alcoholism and Drug Dependence, Inc. (@NCADDNational). Please use the hashtag #NOFASchat and help us spread the message that there is no known safe amount of alcohol use during pregnancy – why take the risk?


New resources from the American College of Nurse-Midwives (ACNM) on Alcohol use during pregnancy

NCBDDD had the pleasure of collaborating with ACNM on two new resources on alcohol use during pregnancy:

  • A web page with information that can be shared with patients, including risks of drinking alcohol during pregnancy, a chart showing when birth defects are most likely to occur during pregnancy, and tips on how to avoid alcohol use.
  • A “Share With Women” fact sheet published in ACNM’s Journal of Midwifery & Women’s Health. Available in English and Spanish, they are free access to download and are intended to be provided to patients.
protectingPeople@2x_background Protecting People
stop the clot.jpg

Last month the National Blood Clot Alliance and the Centers for Disease Control and Prevention (CDC), launched the Stop the Clot, Spread the WordTM campaign, in recognition of Blood Clot Awareness Month. The campaign, developed by the National Blood Clot Alliance through a cooperative agreement with the National Center on Birth Defects and Developmental Disabilities at CDC, is a digital media campaign with online information about risks, signs, and symptoms for blood clots. Phase two of the campaign unveils in April and will include dissemination of an infographic on blood clots as well as blogging engagement with more than 75 bloggers on topics of men’s and women’s interest, health, travel, family interest, and sports. You are invited to visit the campaign website and also help spread the word by sharing campaign materials, such as the chart of signs and symptoms, the list of risks, and a video about blood clots. Visit the campaign website and learn more at www.www.stoptheclot/spreadtheword.Read more…

World Hemophilia Day Twitter Chat

Topic: World Hemophilia Day

Date: Friday, April 17

Time: 5:00PM EASTERN

Host: @NHF_Hemophilia & @hemophiliafed

How to Join: Follow @NHF_Hemophilia & @hemophiliafed to join the discussion.


helpingChildren@2x_bacgroundHelping Children
Alison SingerWelcome to New Helping Children Champion, Alison Singer
The Friends Executive Committee welcomes Alison Singer, Co-Founder and President of the Autism Science Foundation, as a new Helping Children Champion. Read more…

Treatment of ADHD among Children with Special Health Care Needs

The Journal of Pediatrics has published a new NCBDDD study, Treatment of Attention-Deficit/Hyperactivity Disorder among Children with Special Health Care Needs, the first national study to look at behavioral therapy, medication, and dietary supplements to treat attention-deficit/hyperactivity disorder (ADHD) among children ages 4-17. Read more…


Act Early Network Virtual Networking Event

Celebrate Autism Awareness Month with the Act Early Network and attend the Act Early Network Virtual Networking Event on Thursday, April 23, 3pm-4pm ET. The virtual networking event will bring together public health, health care, developmental disability, and additional professionals from the Act Early Network and Friends of NCBDDD coalition to share and discuss developmental screening, monitoring, and early identification practices through interactive posters and presentations. Read more…


Beyond Practice: Fostering Diverse Partnerships for Successful Care Coordination

New Image NCMHIThe National Center for Medical Home Implementation (NCMHI) is hosting the second webinar in a three-part series focusing on implementation and evaluation of pediatric care coordination. This webinar will showcase innovative models of cross-system care coordination through family engagement and partnership across clinical, public health, social service, and policy organizations. Faculty will provide real life examples of how successful cross-system care coordination positively influences outcomes patients and families.

April 22, 2015, 11 am – Noon Central Time


OAR Unveils New Resource Packages for Autism Community

hp_logoIn celebration of Autism Awareness Month, the Organization for Autism Research (OAR) is pleased to share two new starter packages available for parents and educators. Read more…


  Improving Health No BackgroundImproving Health
New Guideline Published for Congenital Muscular Dystrophy

NCBDDD’s Division of Human Development and Disability (DHDD) announces the publication of evidence-based guidelines for congenital muscular dystrophy. The new guidelines, developed by the American Academy of Neurology and the American Association of Neuromuscular & Electrodiagnostic Medicine, make recommendations for treating and managing complications such as breathing problems, heart problems, joint stiffness, cognitive problems, and seizures. Read more…


Looking for participants for an online survey for mothers with physical or mobility disabilities

UMass Medical School would like to learn about the health care experiences of mothers with physical or mobility disabilities during pregnancy.  To find out if you are eligible, go to the survey website and answer a few brief screening questions: http://survey.umassmed.edu/moms_disabilities. If you prefer to complete the survey over the phone, please call 1-888-368-7157 to speak to the research staff. (UMMS IRB ID: H00001202)


Improving Health Family Liaison – Jeannette Mejias

Jeannette Megias

“Improving Access and Health Outcomes for Persons with Disabilities is an area that is overlooked and requires an integrated approach to ensure that all the collaborative areas are address in a care-management plan.  It is crucial to me as a caregiver and as a professional working in the system of care that we strive to ensure that individuals with disabilities experience seamless services from systems and coordinated care within a medical home and increased access to better health care systems to achieve the optimal health and overall potential.”



AUCD2015: Submit a Proposal Today – Deadline: June 2

AUCD_AM15_logo_CMYKAUCD is currently accepting proposals for our 2015 conference. This call for papers includes submissions for concurrent interactive presentations, concurrent panel presentations, single presentations, and posters. Read more about the format and requirements for each event on the Presentation Details page, especially noting the revamped poster session formats. Proposals are welcomed on a multitude of topics on all things disability, including but certainly not limited to advocacy, behavior supports, disability studies, employment, health and wellness, leadership development, self-determination, technology, and much more. http://www.aucd.org/conference/


Promoting Health & Safety for Workers with Disabilities: Realizing the Promise of the ADA

June 9 – 10, 2015, Chicago, IL

The Americans with Disabilities Act turns 25 this year! This conference will explore its impact in the workplace. Join us to: Discuss recent legislative changes to recruit, hire, promote, and retain employees with disabilities, workers with chronic conditions, workers with work-related injuries, and workers who may be experiencing age-related changes which impact their work capacity. Discover how employers in various industries have created safe work environments to support workers with disabilities. Share successful policies and programs in worker health promotion, worker health and safety protection, and case management serving workers with disabilities. Hosted by UIC’s School of Public Health. Register by May 1 for reduced conference fee of $125. After May 1, the conference fee is $165. Register here…


News from NCBDDD
NCBDDD would like to congratulate its winners and nominees recognized at the 63rd CDC & ATSDR Honor Awards Ceremony  Read more…
Executive Committee
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button to submit articles to AUCD 360 form News items may be submitted for consideration via email to acostalas@aucd.orgSend 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 5/4/2015. Photos and web links are encouraged!!

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

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