February 2013

In this Issue

Greetings from the Chair

Parent Corner

News from NCBDDD
Exploring the Intersections
of Race, Gender, & Disability

New Report: Safe Lists for
Medications in Pregnancy

Public Health Webinar
Series on

Show Your Love: A New
National Campaign

News from our Partners
New Information Hub
for Vetrans with
Vision Loss

Fellowship & Research
Opportunities Available

APHA Disability Section
Call for 2013 Awards

AFB’s 2013 Leadership

Webinar News
ACHA Webinar:
Guidlines for the
Management of the
Adult with Congenital
Heart Disease

Revising the ICD
Definition of Intellectual
Disability: Implications
& Recommendations

Webinars Available from
CHADD & the National
Resource Center on ADHD

Friends of NCBDDD Executive Committee

Adriane Griffen, Chair
Craig Mason, Vice Chair
Jeff Cohen, Membership/Communications
Judit Ungar, Member at Large
Cindy Brownstein, Member at Large
Carolyn Mullen, Member at Large
Alan Brownstein, Member at Large
Mary Andrus, Member at Large
Emil Wigode, Advocacy Coalition Liaison
Annie Acosta, Advocacy Coalition
Melissa Putman, Advocacy Coalition Co-Chair
Roberta Carlin, Past Chair

Conferences & Events

CEDR National Conference
March 11-12, 2013
Crystal City, VA

AFB’s 2013 Leadership

April 18-19
Chicago, IL

Health Disparities Research
at the Intersection of Race,
Ethnicity, and Disability: A
National Conference

April 25-26, 2013
Washington, DC

Training Program on
Surveillance and Prevention
of Birth Defects and
Preterm Births

May 27-31
Geneva, Switzerland

July 10-12
Dallas, TX

Upcoming Webinars
& Webcasts

Public Health Grand Rounds
Reducing the Burden of
HPV-Associated Cancer &
Disease through
Vaccination in the US

February 19, 1 pm EST
Watch via Webcast: www.cdc.gov/about/

 ACHA Webinar
Guidelines for the
Management of the
Adult with Congenital
Heart Disease

February 21, 7 pm EST

Click here to register

Revising the ICD Definition of Intellectual Disability:
Implications & Recommendations

March 19, 3 pm EST

Click here to register



Assistance FOA

*Deadline: 3/7

OAR Applied Research

*Deadline: 4/5

Fellowship & Research

*Fellowship Deadline: 3/4
*Research Deadline: 3/15

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
by March 8, 2013. Photos and web links are encouraged!

NCBDDD’s Social
Media Corner

Please join us!
Upcoming Social Media Events

Upcoming Facebook Chat!
Topic: Blood Disorders & the
3 P’s (Preconception,
Pregnancy, & the Postpartum
Period): What Every Woman
Needs to Know
Date: Thursday, March 7
Time: 12:00 pm ET
Host: NCBDDD’s Division of Blood Disorders
How to Join: Visit https://www.facebook.com/CDC
& participate in the chat
by asking questions.

What you can do:
• Forward this information to your colleagues and networks and ask them to participate!
• Promote the chats with your own tweets or by retweeting @DrBoyleCDC.

Check out three new NCBDDD Profiles on ShareCare, the
popular consumer webiste
associated with Dr. Oz!

Dr. Coleen Boyle
Dr. Althea Grant
Susanna Visser

Leadership on Twitter:

Dr. Coleen Boyle, NCBDDD Director: https://twitter.com/DrBoyleCDC

Dr. Althea Grant, Acting Director
of the Division of
Blood Disorders: https://twitter.com/DrGrantCDC

Dr. Scott Grosse, Research Economist in the Division of
Blood Disorders: https://twitter.com/DrGrosseCDC

Dr. Georgina Peacock, Developmental Pediatrician in
the Division of Birth Defects
and Developmental Disabilities: https://twitter.com/DrPeacockCDC

Susanna Visser, Epidemiologist
in the Division on Human
Development and Disability: https://twitter.com/VisserCDC



Join the Friends of
NCBDDD Listserv

Greetings from the Chair

Adriane Griffen, ChairFebruary is racing by! We wanted to let you know that the Executive Committee is working on plans for exploring social media as a way to support more dynamic communications efforts with NCBDDD and with each other. Please be on the lookout for a quick survey by the end of the month so that we may better address your needs.

As always, you are welcome to share your news about any upcoming events or happenings on the Friends listserv at any time by sending an email to friendsncbddd@lyrisvs.aucd.org. Let us hear from you!

Please feel free to reach out to any of the Executive Committee members if you would like to become more involved in the Friends’ activities. The contact information for the Executive Committee is highlighted in the left side bar of the newsletter, so you can contact us as needed.

Together we can enhance the activities of 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.

Best regards,

Adriane Signature

Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

Parent Corner

beckettAs we have been facing the fiscal cliff and possible sequestration, we all know that families and individuals we serve will be impacted significantly. The many organizations funded to deliver services to them and advise state and federal agencies on how to best proceed with documenting the need will be impacted as well.

Ever since Katie’s loss last spring I have been undergoing a type of self-evaluation. As a co-founder of Family Voices and recent elect to its Board of Directors, I am proud of where we have come from and believe that families and consumers bring a unique perspective to all.

One such example of this knowledge and expertise is within the American Academy of Pediatrics. They have recently endorsed, as a part of their Megatrends in pediatrics, the importance of involving families/consumers at all levels in the health care delivery system. They have recognized and endorsed “family-centered” care and have incorporated its importance into the “medical home” practice. As co-chair of the Parent Advisory Group with the Academy’s section on home care, we have committed to helping pediatric practices improve their relationships with families. We have been working in an advisory capacity to a number of committees and task forces to improve relationships with families and consumers in this “medical home” model.

Several years ago the concept of “medical home” conjured up a model of bricks and mortar. Now many policymakers and bureaucrats know and endorse this “family-centered” model. It has been demonstrated that “medical home” can reduce costs, improve service delivery and better utilize health care dollars. Involving families in this health care delivery model provides a strong support mechanism for the delivery of care. When consumers are happy with the way things are run within a practice, more families and consumers wish to be a part of it. It has proven its fiscal worth to medical practices.

Family organizations such as Family Voices, Parent to Parent USA, and the National Federation of Families for Children’s Mental Health each have a unique perspective to offer. Given the budget crisis, we have been involved in over the last few months, we need to form an alliance that helps support the families we all work with and provide input from them as our health care system changes. You will be hearing more about these efforts as time moves on. Any comments or questions can be directed to Julie Beckett at waivermom@earthlink.net.

News from NCBDDD

CRITICAL JUNCTURE: Exploring the Intersections of Race, Gender, and Disability

The James Weldon Johnson Institute for the Study of Race and Difference (JWJI) and The Graduate Institute of Liberal Arts (ILA) at Emory University present CRITICAL JUNCTURE: Exploring the intersections of race, gender and disability. CRITICAL JUNCTURE is a conference that seeks to foster discourse on identity, difference and inequality from a variety of disciplinary and interdisciplinary perspectives. We invite the engaged participation of researchers, scholars, community artists, and organizers whose work focuses on the impact of the relationship between social identities and the contexts within which they form. In particular, we will explore the interstices of identity and inequality that bring people into contact with institutional and cultural power in a variety of social spaces (e.g. workplaces, ‘public’ spaces, state institutions, educational systems, local and global economies, and health systems).

This conference is scheduled from March 22 -March, 23 at Emory University in Atlanta, Georgia. For more information, contact criticaljunctureconference@gmail.com or visit the conference website at http://criticaljunctureconference.wordpress.com/.

New Report: Safe Lists for Medications in Pregnancy

The journal Pharmacoepidemiology and Drug Safety recently published a new brief report online: “Safe Lists for Medications in Pregnancy: Inadequate Evidence Base and Inconsistent Guidance from Web-based Information, 2011.” The report summarizes an environmental scan that identified 25 active Internet sites that list medications reported to be safe for use in pregnancy and highlights the inadequate evidence base and inconsistent guidance provided by these sites. See below to read a summary of the findings and to learn about CDC’s activities associated with medication during pregnancy. Please feel free to share the summary with your friends and colleagues, or post it on your website. A press kit of other materials is also available for your use at http://www.cdc.gov/media/dpk/2013/dpk-safe-meds.html.

Main Findings from the Study:
Numerous internet websites post lists of medicines that are safe to take during pregnancy. However, these lists are based on limited evidence and provide inconsistent guidance for women. Half of the websites examined were missing a key message encouraging women to talk to their health care provider about using medicine during pregnancy.

Medication during pregnancy: CDC’s Activities
CDC is committed to working with its partners and the public to build a comprehensive approach to understanding and communicating the risks of birth defects that potentially are associated with the use of medications during pregnancy.
      — Research: CDC funds a large study of birth defects called the National Birth Defects Prevention Study. This study is working to identify risk factors for birth defects and to answer questions about some medications taken during pregnancy.
      — Technical Expertise: CDC works with staff from the U.S. Food and Drug Administration and other professionals to help conduct studies on the effects of medication use during pregnancy and ways to prevent harmful effects.

Public Health Webinar Series on Hemoglobinopathies

NCBDDD’s Division of Blood Disorders is hosting a public health webinar series on hemoglobinopathies. The purpose of this webinar series is to offer a hemoglobinopathies learning collaborative platform for providers, consumers, educators, and scientists. Webinars will occur on the fourth Thursday of every month from 2:00 pm – 3:00 pm ET. February’s webinar will feature Dr. Carlton Haywood Jr., Johns Hopkins University. Dr. Haywood will discuss, “Disparities in Sickle Cell Disease Care: Disentangling the Roles of Race, Place, and Disease State.” To join the webinar, go to https://www.livemeeting.com/cc/cdc/join. For audio, dial 1-877-951-6706, code: 9706616. All webinars will be archived.

For questions or comments about this series, or to share ideas on topics for future webinars, contact Shae Pope at spope@cdc.gov .

Register now –space is limited! Click here to reserve your Webinar seat! After registering, you will receive a confirmation email containing information about joining the Webinar.

Show Your Love: A New National Campaign

Show Your Love is a new national campaign developed by the CDC and the National Preconception Health and Health Care Initiative (PCHHCI) Consumer Workgroup. The campaign is designed to improve the health of women and babies by promoting preconception health and health care. The campaign’s main goal is to increase the number of women who plan their pregnancies and engage in healthy behaviors before becoming pregnant. For those women who don’t want to start a family in the near future or at all, the campaign encourages them to choose healthy behaviors so that they can be their best and achieve the goals and dreams they have set for themselves.

The Show Your Love campaign launched on Valentine’s Day and run through National Women’s Health Week in May. The campaign targets women of childbearing age (18-44 years) and includes tailored materials for women who are planning a pregnancy in the next couple of years, and those who are not. Tools are available at www.cdc.gov/showyourlove and www.cdc.gov/quierete for Spanish speakers. To get involved in the campaign visit  www.cdc.gov/showyourlove.

News from our Partners

New Information Hub for Vetrans with Vision Loss

afbVeterans experiencing vision problems have a new place to find help. The guide, titled “Information for Veterans Coping with Vision Loss,” is available on VisionAware, a website for adults with vision loss from the American Foundation for the Blind and Reader’s Digest Partners for Sight Foundation. This resource serves veterans with vision loss, their families, caregivers, healthcare providers, and social service professionals.

Whether visitors have an eye injury sustained during active service or age-related vision loss, the guide offers a one-stop hub of information and support ranging from daily living tips to a directory of regional services and local agencies, as well as:
      — A broad view of veterans’ services
      — Interviews with veterans experiencing vision loss
      —Veterans’ Forum message board
      — Essential skills for living with vision loss
      — Emotional support and help for families
      — Employment issues and support
      — Information for older veterans

NCBDDD DRDC 2013 Fellowship and Research Opportunities Available

NCBDDD has announced new fellowship and research opportunities for 2013. The fellowship opportunity will involve activities with the “Learn the Signs. Act Early.” program while research will be funded in four areas including child mental health, early identification of developmental delay, outcomes for children with hearing loss, and improving screening for hearing loss in WIC programs. Information about the fellowship and research opportunities is available on the newly created Disability Research and Dissemination Center (DRDC) website at www.disabilityresearchcenter.com.  Both fellowship and research submissions are on-line submissions handled exclusively through the DRDC website. The deadline for RFA submissions is March 15th, 2013. Please contact info@disabilityresearchcenter.com for questions.

APHA Disability Section Call for 2013 Awards Nominations

apha mtgJoin the APHA Disability Section in honoring those who have made significant contributions to the field of disability within the context of public health. If 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, or know an especially dedicated student, now is the time to nominate him or her for one of the 2013 APHA Disability Section Awards. 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.

For further information and to obtain a nomination form, please contact Adriane Griffen, APHA Disability Section Awards Committee Chair, at agriffen@aucd.org with the words “Awards Nomination Form Request” in the email subject line. The deadline for nominations is 5pm ET Wednesday, April 10, 2013. The winners will be presented with their awards at the 2013 APHA Annual Meeting in Boston during the Disability Section Business and Awards Meeting.

AFB’s 2013 Leadership Conference

afb conferenceThe American Foundation for the Blind and Illinois AER invite you to the jointly hosted 2013 Leadership Conference at the Renaissance Chicago Downtown, April 18-20. Join experts and colleagues for intensive pre-conference sessions on April 18 and full-conference sessions on April 19 and 20. Conference topics include leadership, technology, education, rehabilitation, and research. Register now!

Webinar News

ACHA Webinar – Guidelines for the Management of teh Adult with Congenital Heart Disease

In this Adult Congenital Heart Association (ACHA) webinar, ACHA’sacha logo Education and Outreach Manager, Ruth Phillippi, will review the most recent set of guidelines from the American College of Cardiology and the American Heart Association for the management of adults living with congenital heart disease and explain what that means for you. Click here to register!

Revising the ICD Definition of Intellectual Disability: Implications and Recommendations

The International Classification of Diseases (ICD) is a tool for practitioners, researchers, consumers, administrators, policy makers, and governments. Published by the World Health Organization (WHO), it is the basis for WHO member countries’ (a) assessment and monitoring of mortality, morbidity, injuries, external causes, other health parameters; (b) tracking epidemics and disease burden; (c) identifying appropriate targets of health care resources; and (d) public health accountability. The 11th iteration of the ICD is under development. The American Association on Intellectual and Developmental Disabilities (AAIDD) and the Association of University Centers on Disabilities (AUCD) have been part of the WHO process for stakeholder input on the condition previously known as “mental retardation.” Join AIDD and AUCD on March 19 at 3:00 pm ET to hear more about this process. There will be time set aside for Q&A. Click here to register!

Webinars Available from CHADD and the National Resource Center on ADHD

chaddChildren and Adults with Attention Deficit/Hyperactivity Disorder (CHADD) and the National Resource Center on ADHD have several new webinars available from the Ask the Expert online webinars series. Visit the NRC YouTube Channel to view the webinars, including newly added ADHD, LD, and Chronic stress with Jerome Schultz, PhD, Clinical Neuropsychologist, author and consultant, Harvard Medical School and ADHD and Smoking with Scott Kollins, PhD, Director of the Duke University ADHD program. Click here to find information about upcoming Ask the Expert events.

The Friends of NCBDDD is a coalition of government and private sector participantswho 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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