June 2014

In this Issue

Greetings from
the Friends of

Parent Corner

News from NCBDDD

Act Early Ambassador
Training and Orientation

NCBDDD Strategic Health
Initiative Proposal:
Prevention of Healthcare
Associated VTE (HA-VTE)

Global Partners Unite
to Advance Spina Bifida
and Hydrocephalus
Prevention and Care

Alcohol and Pregnancy
Twitter Chat

NEW! Birth Defects
COUNT Newsletter

NCBDDD’s Division of
Blood Disorders:
Webinar Series on
Bleeding and
Clotting Disorders

Treating for Two:
Safer Medication
Use in Pregnancy

News from our Partners

News from The Arc

Dr. Robert Brent
Receives HPS Award

Endorse the
Six by Fifteen
Campaign Goals

Upcoming AAP Webinars

14th International
Fragile X Conference


National Down Syndrome
Congress Convention

July 11-13
Indianapolis, IN

14th International
Fragile X Conference

July 16-20
Orange County, CA

2014 Southwest
Conference on Disability

October 7-10
Albuquerque, NM

AUCD 2014 Conference
November 9-12
Washington, DC


Vitamin K and Vitamin K
Deficiency Bleeding in Infants

July 10, 2pm ET
*Click here for instructions
on joining the webinar

CDC Public Health
Grand Rounds

July 15, 1 pm ET

Myths, Media and the
Medical Home

July 16, 3pm ET

From Hurricanes to
Pandemics: Helping
Practices Prepare
for the Worst

July 18, 12:00pm CDT

Detection, Discovery
and Diagnosis

July 28, 3pm ET

Medical Diagnosis and
Health Care Justice

July 30, 2:00pm ET

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 7/11.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen
Chair (twitter.com/adrianegriffen)
Craig Mason
Vice Chair
Sarah Yates
Patrick Johnson
Mary Andrus
Member at Large
Angela Blackwell
Member at Large
Jeff Cohen
Member at Large
Barbara Kornblau
Member at Large
Sara Struwe
Member at Large
Emil Wigode,
Advocacy Coalition Liaison
Annie Acosta,
Advocacy Coalition
Joe Isaacs
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

NCBDDD’s Social
Media Corner

Leadership on Twitter:

Dr. Coleen Boyle,
NCBDDD Director:

Dr. Althea Grant,
in the Division of
Blood Disorders:

Dr. Scott Grosse,
Research Economist
in the Division of
Blood Disorders:

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

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

Greetings from the Friends of NCBDDD

Adriane Griffen, Chair

Dear Friends,

Happy summer to all of you! We are excited to report that the Executive Committee has collaborated with NCBDDD to develop four Friends Focus Areas:

  1. Saving babies through birth defects prevention and research
  2. Helping children live to the fullest by understanding developmental disabilities like autism
  3. Protecting people and preventing complications of blood disorders
  4. Improving the health of people with disabilities

Now we need your help to serve as a Champion for one of more of these areas. The idea is that Champions would recruit Friends who have interest in the particular focus areas.  As a Champion you would have the opportunity to provide content area expertise, join the newly formed Friends Communications Committee to coordinate messaging and help tailor specific messages for key target audiences. We are looking for Friends who are family members, have experience in media relations or have government relations experience. This is a great way to connect with the Executive Committee of the Friends, NCBDDD and other members of the Friends.

We just convened the first meeting of the Communications Committee last week, but you still have the chance to get in on ground floor! Please complete this poll to indicate your availability for a second call for this committee.

We look forward to hearing from you and speaking with you soon! In the meantime, please feel free to reach out to me with any questions you may have: agriffen@aucd.org.

Thank you for all you do to make a difference!

Adriane Signature

Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

News from NCBDDD

Act Early Ambassador Training and Orientation

NCBDDD’s “Learn the Signs. Act Early.” (LTSAE) program, with support from the Association of University Centers on Disabilities, recently welcomed their 4th cohort of Act Early Ambassadors with a training and orientation event in Atlanta2014 Act Early Ambassadors on June 3 and 4. For the 2014-2016 term, 32 Act Early Ambassadors will represent 29 states and 1 national organization (Autism Speaks). Ambassadors serve as a state, territory or organizational point-of-contact for the LTSAE program; support the work of Act Early Teams and other state or national initiatives to improve early identification of developmental delay and disability; and promote the adoption and integration of LTSAE resources into programs serving families with young children, including materials to support developmental monitoring.

NCBDDD Strategic Health Initiative Proposal: Prevention of Healthcare Associated VTE (HA-VTE)

Patients who are currently or recently hospitalized, recovering from surgery, or being treated for cancer have an increased risk of developing serious and potentially fatal blood clots in the form of venous thromboembolism (VTE). Each year VTE affects as many as 900,000 Americans leading to approximately 100,000 premature deaths.  Effective VTE prevention strategies exist, and CDC’s initiative will help to promote effective prevention strategies and build capacity needed by hospitals and healthcare systems to prevent death and illness from VTE while also providing a much needed means to monitor, evaluate and report on the outcomes and utility of these efforts.

Read more…

Global Partners Unite to Advance Spina Bifida and Hydrocephalus Prevention and Care

NCBDDD co-hosted the Spina Bifida and Hydrocephalus Partner Engagement Meeting held in Boston, Massachusetts on April 11, 2014. The meeting, organized by Boston Children’s Hospital, the International Federation for Spina Bifida and Hydrocephalus and NCBDDD, brought together representatives from 21 organizations in various industries to explore synergies to strengthen global efforts for both primary prevention of spina bifida as well as secondary care for persons impacted by spina bifida and hydrocephalus.

Read more…

Alcohol and Pregnancy Twitter Chat

Thank you to everyone who participated in or followed along with the April 29th Twitter chat on Alcohol Use during Pregnancy and FASDs hosted by March of Dimes. It was a great collaborative effort between March of Dimes (@modhealthtalk), the National Organization on Fetal Alcohol Syndrome (@NOFAS_USA) and CDC (@DrBoyleCDC). We were excited to see many other partners joining the chat including American Academy of Nursing (@AAN_Nursing), American Academy of Pediatrics (@AmerAcadPeds and @HaganAAP), Association of Women’s Health, Obstetric & Neonatal Nurses (@AWHONN), National Institute on Alcohol Abuse and Alcoholism (@NIAAAnews), The Arc (@TheArcUS) and The Center on Alcohol Marketing & Youth (@CAMYJHU).  For a metrics report from the chat and to view the tweets, click here.

NEW! Birth Defects COUNT Newsletter

Neural Tube Defects Prevention LogoThe inaugural release of the Birth Defects COUNT newsletter was sent out to our global partners on June 2. Birth Defects COUNT (Countries and Organizations United for Neural Tube Defects Prevention), NCBDDD’s global birth defects prevention initiative, aims to increase folic acid intake among women of reproductive age for the prevention of neural tube defects globally. This first edition of the newsletter highlights a collaborative initiative between NCBDDD and clinicians and epidemiologists in Kenya. The newsletter also includes a partner spotlight on the International Federation for Spina Bifida and Hydrocephalus (IF), and other exciting news and events about NCBDDD’s global birth defects prevention work. If you would like to join the newsletter listserv, please send an email request to BirthDefectsCOUNT@cdc.gov

NCBDDD’s Division of Blood Disorders: Webinar Series on Bleeding and Clotting Disorders

NCBDDD’s Division of Blood Disorders’ webinar series on bleeding and clotting disorders will focus its July 10 webinar on vitamin K and vitamin K deficiency bleeding in infants. Lauren Marcewicz, MD, a pediatrician and Epidemic Intelligence Service Officer with the Division of Blood Disorders at the Centers for Disease Control and Prevention, will review how vitamin K works in infants, discuss the different classifications of vitamin K deficiency bleeding, and explain the origins of objections that some parents have raised when asked about administration of this important public health preventive measure for their baby.  For more information about this webinar, please contact Cynthia Sayers at cay1@cdc.gov.

Read more…

Treating for Two: Safer Medication Use in Pregnancy

Treating for Two is CDC’s strategy to improve what we Treating for Two: Safer Medication Use in Pregnancyknow about the safety of medication use in pregnancy and reduce harmful medication exposures.CDC is working with other federal agencies and non-federal partners to improve the quality and availability of information on the effects of medication use during pregnancy. This initiative will prevent birth defects and make mothers healthier by identifying the best treatments for managing health conditions during pregnancy and the childbearing years. You can find more information about CDC’s initiative to promote safer medication use in pregnancy here.

Read more…

News from our Partners

News from The Arc

FASD Resources and Support for Health Care Professionals

The Arc’s Fetal Alcohol Spectrum Disorder (FASD) Prevention Project works to increase provider knowledge of the risks alcohol poses to a fetus, the use of FASD prevention strategies, including screening and assessment mThe Arc FASD Graphicethods, and consistent messaging with patients: no amount of alcohol is safe during pregnancy. The project seeks to engage and empower health care professionals/providers with the support of our national partners. The Arc values the ideas, experiences, and expertise of people in the FASD prevention community. If you have expertise in FASD prevention, we welcome you to contact us to explore future partnerships. We invite everyone interested in FASD prevention to be part of this important initiative and participate in upcoming events, webinars, and project activities.

Read more…

HealthMeet Webinar: Medical Diagnostics and Health Care Justice

This webinar will take place on July 30 at 2:00 pm ET, and will feature a discussion on medical diagnostics and healthcare justice, with leaders from the US Access Board and the Disability Rights Education & Defense Fund.  Attendees will learn updates on the current medical diagnostics rule as well as how to educate others in their communities about health care provider misconceptions and stereotypes. Click here to register.

Dr. Robert Brent Receives HPS Award

Dr. Robert Brent headshotDr. Robert L. Brent is the fifth recipient of the Health Physics Society (HPS) Distinguished Public Service Award for 2014. This award will be presented to Dr. Brent on July 15, 2014 at the Health Physics –Radiation Safety Conference in Baltimore, Maryland.

One of the attributes for this award is “service to the general public that significantly contributes to the relationship between the public and the health physics profession.” Dr. Brent’s contributions to the profession’s public information efforts are unequaled. He frequently speaks at HPS meetings about communicating with the public, provides continuing-education courses on radiation effects and the developing fetus and offers counsel to many families via the HPS website “Ask the Experts (ATE)” feature since its beginning more than 20 years ago. Through ATE and in his clinical positions, he has consulted with hundreds of thousands of pregnant women, their spouses and/or their physicians regarding radiation exposure.

Endorse the Six by Fifteen Campaign Goals

To honor anniversaries of the Individuals with Disabilities Education Act and Americans with Disabilities Act, six national disability organizations have begun the Six by Fifteen Campaign. The purpose Six by Fifteen logoof the campaign is to achieve six national goals important to people with disabilities by the end of 2015. This campaign builds on Senator Harkin’s goal to see 6 million working age adults with disabilities participating in the labor force by 2015 and adds goals related to employment, transition, health, community living and early childhood. Click here to join the campaign and endorse the goals.

Upcoming AAP Webinars

From Hurricanes to Pandemics: Helping Practices Prepare for the Worst

AAP logoThe American Academy of Pediatrics and the Centers for Disease control and Prevention will offer the webinar, “From Hurricanes to Pandemics: Helping Practices Prepare for the Worst,” on July 18 at 12:00 pm CDT. This one hour webinar is geared toward the primary care provider who works in an office setting. The webinar will offer general preparedness strategies and ideas for how pediatricians and their office staff can prepare for disasters. Tips will be shared on how pediatricians can work to improve preparedness in families with children with special health care needs, as they are more vulnerable in disasters. The Webinar will also assist pediatricians to take concrete steps to strengthen office practices related to newborn screening and contingency planning. Speakers include Scott Needle, MD, FAAP; Georgina Peacock, MD, MPH, FAAP; and Timothy Geleske, MD, FAAP. Click here to register, or send your name and email address to DisasterReady@aap.org.

FASD Webinar Series

The AAP, via its Program to Enhance the Health and Development of Infants and Children, is offering a series of four 30-minute educational webinars focused on raising awareness of primary care clinicians regarding the diagnosis and treatment for children with Fetal Alcohol Spectrum Disorders (FASDs). The educational webinars will focus on identification, diagnosis, referral, and management of FASDs.

Read more…

The 14th International Fragile X Conference

Join the National Fragile X Foundation (NFXF) on July 16-20, 2014, for the 14th International Fragile X Conference in Orange County, California. Countless number of attendees have called the International Fragile X Conference a life-chanNFXF 30 Year Anniversary Logoging event that anyone impacted by Fragile X should attend. Don’t miss it! Discover the latest research by some of the world’s leading Fragile X experts. Learn new techniques, behavioral interventions and coping strategies. Connect with researchers, clinicians, educators, psychologists and parents. Get the support you need. Start new lifelong friendships and reconnect with old friends. Online Registration is now open. Click here to learn more.

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 Tory Christensen.

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