July 2014

In this Issue

Greetings from
the Friends of

Parent Corner

News from NCBDDD

NCBDDD’s Congenital Heart
Defects Webpages Updated

New CDC Materials
Available on Preventing
Alcohol Use during
Pregnancy & FASDs

July: National Cleft and
Craniofacial Awareness
and Prevention Month

New Web Resources on
Alcohol Screening and
Brief Intervention

Congenital Heart Public
Health Consortium
Webinar Series

State Indicator
Report on Physical
Activity Released

News from our Partners

NHF Initiates Practice
Guidelines on
Hemophilia Care

AAHD Project Accessibility
USA Launches Interactive
Learning Modules

Vitamin Grants for
Children and Mothers!

July is Fragile X
Awareness Month and
the NFXF Invites You
to Help Spread the
Word about Fragile X!

Ohio Graduate of the
PHF Supported 2014
E-Learning Institute

New Resources
about EPSDT
Services in Medcaid

Public Health is
for Everyone

News from Avery’s
Angels Gastroschisis

University of Montana
Developing Health
Related App for
Persons with Disabilities


2014 Southwest
Conference on Disability

October 7-10
Albuquerque, NM

AUCD 2014 Conference
November 9-12
Washington, DC


Public Health Framework
for Congenital Heart Defects

August 12, 1pm ET

FASDs: Roles, Referrals
and Reimbursement

August 13, 3pm ET

CDC Public Health
Grand Rounds: Infertility

August 19, 1 pm ET

Living Well with
Eisenmenger Syndrome

August 25, 7pm ET

FASDs: Communication,
Care Coordination and

August, 27 3pm 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 8/1.
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

*Read the minutes of
the monthly Executive
Committee Calls here!

NCBDDD’s Social
Media Corner

Follow NCBDDD on Twitter:

As you many know by now
NCBDDD has streamlined
its Twitter strategy from
five handles to one:
At this time we would like
to encourage all of you
to include our new NCBDDD
Connect badge to your
signature block. It is a
great way to increase
the visibility of NCBDDD
social media presence
among our audiences—
and hopefully it will result
in continued increases in
followers and engagement.
The more followers NCBDDD
has, the more potential
exposure to the topic areas.

Add NCBDDD Connect
Badge to E-mail Signature:

NCBDDD Connect Badge

Add the “Connect with NCBDDD”
button to an e-mail signature
by following the steps below:

  1. Open Microsoft Outlook
  2. Go to File > Options >
    Mail > Signatures
  3. Right click the graphic
    below and select “copy”
  4. Paste the graphic
    into your desired
    signature in the
    “Edit signature” field
  5. Click on the graphic
    and then click the
    hyperlink icon in the
    top right of the
    “Edit signature” field
  6. Be sure that the URL
    below is listed in the
    URL box and hit OK


Greetings from the Friends of NCBDDD

Adriane Griffen, Chair

Dear Friends,

I want to be sure that you take note of the recent launch of NCBDDD’s Fiscal Year 2013 Annual Report. In this report you will find information about the Center’s budget, state funding, accomplishments, and scientific publications. In addition, the Executive Committee of the Friends has collaborated with the Center to launch a new strategy centered around four thematic areas covered in the report including:

Saving Babies through Birth Defects Research and PreventionFocus Area 1: Saving Babies through Birth Defects Research and Prevention
Understanding Autism to Help Children Live to the FullestFocus Area 2: Understanding Autism to Help Children Live to the Fullest
Protecting People and Preventing Complications of Blood DisordersFocus Area 3: Protecting People and Preventing Complications of Blood Disorders
Focus Area 4:Improving the Health of People with Disabilities Improving the Health of People with Disabilities

Champions – Making a difference across the lifespan
We are excited to launch a new strategy of engaging Champions for each of these areas. It is my hope that this strategy will engage Friends who have interest in the particular focus areas in a more proactive way. Champions will have the opportunity to provide content area expertise and to join the newly formed Friends Communications Committee to coordinate messaging for key target audiences.

We are happy to announce the following members of the Friends as Champions:

  • Focus Area 1: Emile Wigode, March of Dimes
  • Focus Area 2: Pat Johnson, American Academy of Pediatrics; Adriane Griffen, Association of University Centers on Disabilities
  • Focus Area 3: Katie Verb, Hemophilia Federation of America
  • Focus Area 4: Roberta Carlin, American Association on Health and Disability; Sarah Yates, National Association of County and City Health Officials

These Champions will be your conduit to the Friends Executive Committee and leadership of the Center, so please reach out to the Champion in your particular focus area to share any updates or ideas you may have.  These Champions will also be in touch with you in the weeks and months to come.

Finally, we can always use a few more Champions! An outline of Champions responsibilities is available on the Friends home page at www.friendsofncbddd.org. If you are interested in serving as a Champion, please contact me at agriffen@aucd.org.

Together we can do more than we can do separately, so let’s use this opportunity to collaborate!

Adriane Signature

Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

Parent Corner

Julie and Katie BeckettIn an attempt to help provide information to the Disability and Health (D&H) state programs about Family-to-Family (F2F) Health Information Centers (HIC) in their states, a memo was sent out after the May F2F training conference in Washington, DC, to ask how connected they have been with the state programs. The response from the F2F’s varied — some knew the contact provided, some worked very closely serving on advisory board, while others had little to no contact with them. This knowledge is helpful to the Center as they know how important contacts with families can really supply operational directions for the grants provided by NCBDDD. For more information about these interactions, please email me at waivermom@earthlink.net.

Read more…

Julie Beckett

News from NCBDDD

NCBDDD’s Congenital Heart Defects Webpages Updated

NCBDDD has updated its congenital heart defect webpages.  These new pages highlight updated information on care for individuals with congenital heart defects across the lifespan and critical congenital heart defect screening. You can see the new webpages here.

New CDC Materials Available on Preventing Alcohol Use during Pregnancy & FASDs

CDC Materials on Pregnancy and FASDsNew, free materials are available to help you promote alcohol-free pregnancies to women in your communities! CDC has developed resources for women of childbearing age on preventing alcohol use during pregnancy and fetal alcohol spectrum disorders (FASDs) based on formative research findings. The materials target women who are pregnant and women who are trying to get pregnant. The set of materials include print products (a brochure and three posters) that are available to order and are downloadable. Several social media tools, such as banners, badges, and e-cards are also available. Visit our website to learn more about all of the new tools that are available to you. Please help us spread the word – Pregnancy and alcohol don’t mix. Why take the risk?

July: National Cleft and Craniofacial Awareness and Prevention Month

Each year in the United States, more than 7,000 babies are born with a cleft lip with or without a cleft palate, or cleft palate alone. These conditions, along with other birth defects of the head and face, are called craniofacial birth defects. As you may know, July is National Cleft and Craniofacial Awareness and Prevention Month, a great opportunity for people to learn more about these conditions. CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) featured a number of activities throughout the month of July to raise awareness about craniofacial birth defects.

Read more…

New Web Resource on Alcohol Screening and Brief Intervention

An online video on alcohol screening and brief intervention (SBI) is now available on QuantiaMD which offers free Web Resource on Alcohol Screening and Brief Interventioncontinuing education opportunities to physicians. This presentation by Dr. Lela McKnight-Eily, from CDC’s Fetal Alcohol Syndrome Prevention Team, highlights findings from the CDC 2014 Vital Signs report, Communication Between Health Professionals and Their Patients About Alcohol Use — 44 States and the District of Columbia, 2011, and key aspects of alcohol screening and brief intervention.

Congenital Heart Public Health Consortium Webinar Series

The last session of the Congenital Heart Public Health Consortium (CHPHC) webinar series is right around the corner! Have you registered yet? If not, register now, as space is limited! The fourth webinar, “Public Health Framework for Congenital Heart Defects” will occur on August 12, from 1:00-2:00pm ET. The webinar will introduce the Consortium’s Public Health Framework that addresses the public health systems that monitor at all ages, solutions that address prevention disparities, as well as the assurances that are in place to reduce risk and improve outcomes for children and adults.

State Indicator Report on Physical Activity Released

State Indicator Report on Physical ActivityThe Division of Nutrition, Physical Activity, and Obesity released the State Indicator Report on Physical Activity, 2014, which presents data on physical activity behaviors and environmental supports that encourage increased physical activity in each state. You can use this report to learn what states across the nation are doing to encourage and support physical activity. Individual Action Guides summarize each state’s data and provide suggested actions that state health departments can take to encourage and increase physical activity in their states.

Read more…

News from our Partners

NHF Initiates Practice Guidelines on Hemophilia Care

National Hemophilia FoundationThe National Hemophilia Foundation (NHF), with the guidance of its Medical and Scientific Advisory Council (MASAC), recently announced that it is initiating a multi-year project to develop evidence-based clinical practice guidelines (CPGs) to ensure that patients with hemophilia in the United States and elsewhere receive high quality care. With ongoing changes in the healthcare environment, an NHF and MASAC working group determined that the first guideline would focus on evaluating care models for hemophilia management, including the comprehensive care model of the hemophilia treatment centers (HTCs). In addition, NHF is partnering with McMaster University, which has an international reputation for its work in CPG development. The guideline project on models of hemophilia care should be completed by the end of 2015.

Read more…

AAHD Project Accessibility USA Launches Interactive Learning Modules

AAHD LogoThe American Association on Health and Disability (AAHD), in collaboration with the Susan G. Komen Foundation, has launched 5 interactive Learning Modules about the importance of breast cancer awareness and accessibility of mammography facilities for women with disabilities. These modules are geared towards healthcare staff at mammography and healthcare facilities. Certificates of Completion are available for those that complete the Learning Modules. The URL for the Learning Modules is http://project-accessibility-usa.org/Home.htm. They are available for all healthcare professionals to utilize and share with colleagues. For more information, please email contact@aahd.us and place in subject line “Breast Health Collaborative.”


Vitamin Grants for Undernourished Children and Mothers!

Vitamin Angels LogoProper nutrition during the period from conception through a child’s fifth birthday is critical to building the foundation for a healthy and productive life. Vitamin Angels is a non-profit organization distributing vitamins and minerals to children and mothers that are experiencing hidden hunger as the result of gaps in the consumption of a variety of healthy foods. We are actively seeking new NGO partners, especially those who target underserved populations and those without access to national health services, to add vitamin supplementation to their existing projects.

If you or an organization you know is interested in becoming a Vitamin Angels program partner, visit our webpage or contact programs@vitaminangels.org for eligibility requirements and the micronutrient grant application.

Read more…

July is Fragile X Awareness Month and the NFXF Invites You to Help Spread the Word about Fragile X!

NFXF LogoFragile X Awareness Day, which occured on July 22, is officially recognized by Congress. Together we can build recognition for this rare condition. By participating in the National Fragile X Awareness Month campaign, you show the world you care, deeply, about Fragile X, and about getting us one step closer to a cure. Click here to make a donation and learn how to help raise awareness.

Ohio Graduate of the PHF Supported 2014 E-Learning Institute

Norma J Ryan and  Darral BrownDr. Norma J. Ryan, RN, MCHES, Coordinator for Ohio Connections for Children with Special Needs (OCCSN) at the Ohio Department of Health, recently completed the 2014 E-Learning Institute, a collaborative effort between the Public Health Foundation (PHF) and the Centers for Disease Control and Prevention’s (CDC) Division of Scientific Education and Professional Development (DSEPD). Dr. Ryan’s Quick-Learn Lesson is an e-learning module for the 5As Healthy Weight Program, based on a brief intervention model, for health professionals working in women’s health centers. The 5As approach was developed to address obesity and overweight in women of childbearing age since both are potential risk factors for certain birth defects. Dr. Ryan was paired with mentor Darral Brown MSc., M.Ed., Instructional Designer, working with EDCELS in CDC/DSEPD.

Read more…

New Resources about EPSDT Services in Medicaid

blue and white computerThe Maternal and Child Health Library (MCH Library) at Georgetown University released a new knowledge path: Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Services in Medicaid. The knowledge path points to resources about providing and strengthening EPSDT and includes tools for state Medicaid programs, health care practices, training, and finding data and statistics, journal articles, reports, and other materials. The knowledge path is available here. A separate brief is available here.

Read more…

Public Health is for Everyone

Public Health is for Everyone is new, one-stop resource to increase the capacity of public health professionals to create programs that benefit entire communities, including pePublic Health is for Everyoneople who have a disability. Users can search and browse disability and health related resources by their interests and professional needs. Resource topics include: Nutrition, Health care access, Physical activity, Emergency preparedness, Obesity, Accessibility, Tobacco, and general inclusion issues. Practical, hands-on resources such as field guides, factsheets, checklists, brochures and other tools are featured. To check out the new Public Health is for Everyone toolkit, please visit www.phetoolkit.org.

Do you have a practical free resource to share? Submit a resource to further develop Public Health is for Everyone.

News from Avery’s Angels Gastroschisis Foundation

Avery's Angels LogoTo start off July and propel the 5th Anniversary of our awareness day (July 30th), Avery’s Angel’s Gastroschisis Foundation re-launched its website, which is now fully comprehensive. It includes frequently asked questions for parents and families as well as updated research links, information about programs, links for resources and news. Avery’s Angel’s couldn’t be happier to achieve this long held goal.

University of Montana Developing Health Related App for Persons with Disabilities

The University of Montana is developing a health related app for persons with disabilities. They are currently looking for individuals with disabilities to review materials and various educational formats (e.g., video, audio, PowerPoint, animation, etc.) on their computer in order to gain information on which tools are the best received. The first 40 respondents will receive a $10 stipend. 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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