April 2014

In this Issue

Greetings from
the Friends of
NCBDDD Chair

Parent Corner

News from NCBDDD

Announcing an NCBDDD
Policy Research Pilot

2014 ADDM Network
Community Report:
A tool to help
communities take action

Reminder: 2014 National
Birth Defects Prevention
Network Virtual Annual
Meeting

CDC Availability of Funds:
Fetal Alcohol Spectrum
Disorders (FASDs)

NCBDDD’s Fetal Alcohol
Syndrome Prevention
Team Grantee Meeting

Legacy for Children:
Now listed in SAMHSA’s
National Registry of
Evidence-based Programs
and Practices

CDC NCHS Releases
Health Data Interactive
Tutorial Videos

News from our Partners

New Resources Focus on
Autism Spectrum Disorder

News from AAP

Birth to 5: Watch Me
Thrive! Launched

RTI International’s
Communication Science
Innovation Salon Series

News from AUCD

NBCA Gets the Word Out
During March Blood Clot
Awareness Month

New Resources from OAR

Vital Signs

Vital Signs
The next CDC “Vital Signs”
will focus on the importance
of physical activity for people
with disabilities. Look for the
next issue of ”Vial Signs”to be
released at 1 pm ET on May 6!

Conferences

IMFAR 2014
May 14-17
Atlanta, GA

30th Pacific Rim
International Conference
on Disability and Diversity

May 19-20
Honolulu, HI

National Down Syndrome
Congress Convention
July 11-13
Indianapolis, IN

2014 Southwest
Conference on Disability

October 7-10
Albuquerque, NM

AUCD 2014 Conference
November 9-12
Washington, DC
*Call for Proposals Now Open!

Webinars

2014 CAAI Webinar:
Autism Spectrum Disorder
and Transition

April 30, 3 pm ET

CDC Public Health
Grand Rounds

PrEP for Prevention
of HIV
May 20, 1 pm ET

CDC Public Health
Grand Rounds

Hepatitis C
June 17, 1 pm ET

CDC Public Health
Grand Rounds

Autism Spectrum Disorder:
From Numbers to Know-How
Watch Archive!

Funding
Opportunities

CDC-RFA-DD14-1406:
Characterizing the
Complications Associated
with Therapeutic Blood
Transfusions for
Hemoglobinopathies

Deadline: May 12

CDC-RFA-DD14-1402:
FASD Practice and
Implementation Centers

Deadline: May 13 

CDC-RFA-DD14-1403:
Improving FASD Prevention
and Practice through
National Partnerships

Deadline: May 13

CDC-RFA-DD14-1405:
Evaluation of Health Promotion
and Prevention Programs
for  Blood Disorders

New Deadline: May 21

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 5/9.
Photos and web links are encouraged!

Friends of NCBDDD
Executive Committee

Adriane Griffen
Chair (twitter.com/adrianegriffen)
Craig Mason
Vice Chair
Sarah Yates
Membership/Communications
Patrick Johnson
Secretary
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
Co-Chair
Joe Isaacs
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

NCBDDD’s Social
Media Corner

Upcoming Twitter Chat!
Topic: Alcohol & Pregnancy
Date: Tuesday, April 29
Time: 1 pm EDT
Host: March of Dimes
NCBDDD SME: Coleen Boyle
[@DrBoyleCDC]
How to Join: @MODhealthtalk;
#pregnancychat

Follow NCBDDD
Leadership on Twitter:

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

Dr. Althea Grant,
Epidemiologist
in 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

Greetings from the Friends of NCBDDD Chair

Adriane Griffen, ChairDear Friends,

Happy Spring! It really is finally here. I am excited to report that the Executive Committee attended a productive meeting in Atlanta earlier this month with NCBDDD leadership. As a result, the Executive Committee will be calling on the membership to support more dynamic communications efforts through service to the Friends Education and Communications Committee to create ways to better integrate with NCBDDD leadership. More details will be coming in next month’s newsletter.

As you know, NCBDDD was established in April 2001 as a result of the passage of the Children’s Health Bill of 2000 (H.R. 4365-P.L. 106-310). That means that we have a birthday to celebrate! I don’t know about you, but after such a long winter, a little birthday cheer sounds good to me! Join us for a virtual birthday party to celebrate NCBDDD turning 13. We look forward to “seeing” you there!

yellow, red, blue, orange, green balloons Friends Virtual Birthday Party for NCBDDD
Celebrate with a Twitter Chat!
When:Tuesday, April 29, 12pmET-1pmET
How: Tweet your birthday greetings with the hash tag #FriendsNCBDDD

Remember to visit the Friends website at www.friendsofncbddd.org to read archived newsletters, view Friends webinars, and learn about upcoming activities.  As a Friend, you may also post on the Friends listserv at any time by sending an email to friendsncbddd@lyrisvs.aucd.org.

Thank you for all you do each and every day to not only support your own organization’s mission, but also the mission 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. Here’s to many more birthdays to celebrate together!

Best regards,

Adriane Signature

Adriane Griffen, MPH, MCHES
Friends of NCBDDD Chair

Parent Corner

Julie and Katie Beckett

Parent Corner has been asking individual state families to discuss a particular program or event in their state that they actively participate in as a family leader. This last month has been very difficult for the Family Voices Network with the deaths of three of our longtime advocates’ children. We lost LaToya Landrey in Mississippi, daughter of Phyllis Landry; Bridget Mitchell of Vermont, daughter of Maureen Mitchell; and Nick Arango, son of Polly (deceased) and John Arango.

On Sunday, March 23, a beautiful service was held for Nick on the Santa Ana Reservation. Nick was adopted by John and Polly around Christmas in 1976. He was named for the holiday and to recognize his wonderful Uncle Nick Egan, Polly’s brother, who is also deceased.

Nick was very proud of his Native American heritage and unlike others, loved the Washington Redskins! A group of Native American musicians played the drums and sang in Nick’s honor. John also asked several participants to comment on the importance of Nick’s life.

Martha Egan, Polly’s sister, was the first to honor Nick. Her comments reflect on what many family members hope our children leave as a memory for their supporters. Click here to read Martha’s comments.

Julie Beckett

News from NCBDDD

Announcing an NCBDDD Policy Research Pilot

NCBDDD’s Office of Policy Planning and Evaluation (OPPE) and the Center’s Division of Human Development and Disability (DHDD) is initiating a small, “pilot” research project designed to help us better understand how our resources impact services among those we serve. Modeled after similar activities in the Robert Wood Johnson (RWJ) Foundation’s Turning Point project, OPPE and DHDD will be examining whether NCBDDD funding recipients were able to leverage resources received from our Center to generate additional funding or activities in the public, non-profit, and/or private sectors in support of CDC funded activities. Findings will inform contributions to our FY16 budget narrative and related budget communication materials. If this pilot research helps us understand leveraging efforts better among the nine partners we hope to survey, we would plan to expand it to all NCBDDD funded partners at a future date. We believe that this project will help us better understand the importance and impact of federal appropriations on our target populations.

2014 ADDM Network Community Report: A tool to help communities take action

New data from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network show that the estimated number of children identified with autism spectrum disorder (ASD) continues to rise, and the picture of ASD in communities has changed. These new data can be used to promote early identification, plan for training and service needs, guide research and inform policy so that children with ASD and their families get the help they need. CDC has released the fifth iteration of the ADDM Network Community Report, a tool to help communities take action. In addition to state profiles presenting community-specific data on ASD, the ADDM Network Community Report also highlights ways in which national partners and local community leaders have used the ADDM Network data to make improvements for children with ASD. According to Dr. Peggy Schaefer Whitby, Arkansas’ Act Early Ambassador, “[Arkansas ADDM Network data] prompted systematic outreach to local communities, the development of a research team to determine the variables affecting access to services for these children and monitoring of the ADDM data to determine if we are reaching families from minority, rural and low socioeconomic communities.” A downloadable PDF of the ADDM Network Community Report is available online and printed copies are available upon request.Please contact Julia Richardson at JRichardson1@cdc.govfor information about obtaining printed copies.

Reminder: 2014 National Birth Defects Prevention Network Virtual Annual Meeting

The National Birth Defects Prevention Network (NBDPN) will hold its 17th Annual Meeting using a virtual meeting format in a series of four sessions. These sessions will cover current issues in birth defects surveillance, research and prevention. The next session is shown below. Click here to learn more.

  • Session 4: May 28, 2014 from 2:00 – 5:00 PM EDT Birth defects complexes, including embryology, clinical genetics and prenatal diagnosis
CDC Availability of Funds: Fetal Alcohol Spectrum Disorders (FASDs)

CDC is announcing the availability of funds related to fetal alcohol spectrum disorders (FASDs) through CDC-RFA-DD14-1402, “FASD Practice and Implementation Centers,” and CDC-RFA-DD14-1403, “Improving FASD Prevention and Practice through National Partnerships.”  The FASD Practice and Implementation Centers (PICs) will develop, deliver, disseminate and evaluate FASD training programs for health care professionals addressing the prevention, identification, and treatment of FASDs. An increased emphasis on primary prevention, training and sustained practice change among health care professionals is reflected in this program announcement. The purpose of CDC-RFA-DD14-1403, is to strengthen strategic partnerships with key national medical societies, professional organizations and constituent groups to support crucial components of a multi-faceted approach to enhance FASD training, provider education and practice change. This funding announcement creates organizational alignment between the FASD PICs (funded through DD14-1402) and medical societies, professional organizations and partner organizations at national, regional, and local levels; leverages medical and professional organizations in co-branding, promoting and disseminating training to their members; assists the FASD PICs in development of discipline-specific training; and connects providers to community resources and represents perspectives of those living with FASDs. For both announcements, applications are due 5/13/14. To download the full announcements, visit Grants.gov and search by the funding opportunity announcement number. Applications must be submitted through Grants.gov. More information can also be found here.

NCBDDD’s Fetal Alcohol Syndrome Prevention Team Grantee Meeting

NCBDDD’s Fetal Alcohol Syndrome Prevention Team welcomed all of their current grantees to Atlanta on March 24-25 at a meeting, “Partnering for the Prevention of Fetal Alcohol Spectrum Disorders (FASDs).” Attendees represented the FASD Regional Training Centers and Tom Donaldson, National Organization on Fetal Alcohol Syndrome, and Leigh Tenkku, Midwest FASD Regional Training Center. Shown with timeline of national efforts to prevent alcohol-exposed pregnancies.national partners – the American Academy of Pediatrics and the National Organization on Fetal Alcohol Syndrome, CHOICES grantees and new awardees that will be working to advance alcohol screening and brief intervention and CHOICES in American Indian and Alaska Native (AI/AN) populations through training and technical assistance. The meeting represented the first time that all of the Team’s funded partners met simultaneously to create synergy, explore areas of collaboration and sustainability and discuss ways to leverage resources to have maximum public health impact.

Legacy for Children: Now listed in SAMHSA’s National Registry of Evidence-based Programs and Practices

We are excited to announce that CDC’s Legacy for ChildrenTM (Legacy) program has been reviewed by the Substance Abuse and Mental Health Administration (SAMHSA)’s National Registry of Evidence-based Programs and Practices (NREPP). Legacy is an evidence-based parenting program to prevent developmental disabilities and promote child health and development among young children in poverty. Legacy goals are achieved through mother only and mother/child group meetings, one-on-one sessions to reinforce content and participation in community events.

The purpose of NREPP is to help the public learn more about available evidence-based programs and practices and determine which of these may best meet their needs. The NREPP review of research from the randomized controlled trials of Legacy (Quality of Research review) and the availability of supports for fidelity implementation (Readiness for Dissemination review) is now available on their website.

Partners interested in evidence-based programs addressing mental health and substance abuse, such as CDC’s Legacy for ChildrenTM program, should visit www.nrepp.samhsa.gov. For additional information about the Legacy for ChildrenTMprogram, please click here.

CDC NCHS Releases Health Data Interactive Tutorial Videos

TheNational Center for Health Statisticsannounces the release of three tutorial videos for the Health Data Interactiveproject. Health Data Interactive presents tables with national health statistics for infants, children, adolescents, adults and older adults. Tables can be customized by age, gender, race/ethnicity and geographic location to explore different trends and patterns. These new tutorial videos demonstrate how to use the detailed tables and drill into data to display the information you want, the way you want.  Part I explains how to access the site, how to open the data tables and how the tables are oriented. Part II shows how to select categories among the variables and how to change the rows and columns variables. Part III shows how to sort columns and how to “nest” your variables. To use the tutorial, start from Part I and move through the tutorials in chronological order, or pick and choose topics of interests. Please email hdi@cdc.govif you need assistance.

News from our Partners

New Resources Focus on Autism Spectrum Disorder

blue and white computerThe Maternal and Child Health Library at Georgetown University released a new knowledge path and set of resource briefs about autism spectrum disorder (ASD). The knowledge path directs readers to a selection of resources about ASD screening, diagnosis, treatment, care and impact on family life. It includes tools for health care practices; training; improving state systems and services; research; and finding data and statistics, journal articles, reports, and other materials. The knowledge path aims to help health professionals, program administrators, policymakers, and researchers learn more about ASD; to integrate what they know into their work in new ways to improve screening, diagnosis, treatment, and care; for program development; and to locate information to answer specific questions. Companion resource briefs are also available, including briefs on resources for families, resources for schools and screening.

News from AAP

FASD Prevention Video for Alcohol Awareness Month
For Alcohol Awareness Month in April, the American AcademyAAP logo of Pediatrics is promoting the public health message that fetal alcohol spectrum disorders (FASDs) are completely preventable if women do not drink alcohol while pregnant. An estimated 40,000 babies are born each year with FASDs which can affect their physical, mental, behavioral and cognitive development for a lifetime. Click here to watch the video, “Alcohol and Pregnancy: It’s Just Not Worth the Risk.”

Primary care clinicians play an important role in communicating the prevention message and the diagnosis and treatment of FASDs. To support these efforts, the FASDs Toolkit for medical home providers is available online at aap.org/fasd. This comprehensive resource provides practice management and treatment resources including an algorithm for evaluation and sample messaging for talking with families and school staff.

PSAs are also available here.

New Resources & Special Discounts in Recognition of Autism Awareness Month
The American Academy of Pediatrics has several resources available to enhance autism awareness. Special discounts are also available in recognition of Autism Awareness Month.

Resources:

  • Autism: Caring for Children With Autism Spectrum Disorders: A Resource Toolkit for Clinicians, 2nd Edition Sound Advice on Autism
  • Autism Spectrum Disorders: What Every Parent Needs To Know (read the first 3 chapters of the book with AAP’s compliments)
  • ​​Understanding Autism Spectrum Disorder (ASD)
  • Is Your Toddler Communicating With You.

Birth to 5: Watch Me Thrive! Launched

smiling babyTheBirth to 5: Watch Me Thrive!” initiative is a coordinated federal effort to encourage healthy child development, universal developmental and behavioral screening for children, and support for the families and providers who care for them. It will help families look for and celebrate milestones; promote universal screenings; identify delays as early as possible; and improve the support available to help children succeed in school and thrive alongside their peers. Click here to learn more.

RTI International’s Communication Science Innovation Salon Series

“Communicating Genomic Sequencing Findings: Panacea orblue square with white swirls. RTI International written next to the square Pandora’s Box,” an RTI International’s Communication Science Innovation Salon Series event, will take place on April 29, from 3-5 pm ET in Atlanta, GA. Join this event to learn how health care and public health will manage the next generation of genomic sequencing. A panel of experts will discuss the impact on clinical practice, public health and research practices. Discussion will also include challenges raised by the wealth of information generated, and the tools from medicine, public health, and communication science that can help to tackle them. Presenters include Click here for more information about the event.

RTI International’s Communication Science Innovation Salon series provides a forum for exploring critical issues facing health researchers today. Presenters discuss real-world experiences and innovations in an environment that encourages participation.

News from AUCD

Six By 15 Campaign
Six by 15. Blue and white text.Senator Harkin helped the Association of University Centers on Disabilities (AUCD) officially launch its Six By 15 Campaign at the Disability Policy Seminar on April 7, 2014. The Six By 15 Campaign was launched to help mark the 40th anniversary of the IDEA and the 25th anniversary of the ADA. Six national goals in the areas of employment, community living, education, transition, healthy living and early childhood have been set to honor the legacy of the past and help build a new future. Six partner organizations have already joined AUCD’s efforts to achieve these goals by the end of 2015. Visit www.sixbyfifteen.org to learn more and join the campaign!

Public Health is for Everyone Toolkit
Very AUCD logo. Blue and white sunburstfew public health professionals have received specific training on how to incorporate people with disabilities into their efforts. This is why the Association of University Centers on Disabilities (AUCD) has collaborated with NCBDDD at CDC to develop two inter-related projects: Public Health is for Everyone online toolkit.

Public Health is for Everyone is an online toolkit which serves as a one-stop resource to increase the capacity of public health professionals to create programs that benefit entire communities, including people who have disabilities. To view the new Public Health is for Everyone toolkit, visit www.phetoolkit.org.

NBCA Gets the Word Out During March Blood Clot Awareness Month

NBCA logo: two red blood drop shapes overlappingThe National Blood Clot Alliance (NBCA) held U.S. House and Senate awareness briefings and widely disseminated news feeds to media outlets to mark National Blood Clot Awareness month in March. The focus was on knowing signs, symptoms and cause factors. Blood clot prevention is a public health priority, yet the federal investment is tragically inadequate. NBCA called for heightened funding for CDC’s Blood Disorder Division. Read about our briefings here.

More than 20 new personal stories were added to NBCA’s website and the story of Anna Frutiger, daughter of a NBCA Board member, drew more than 20,000 hits alone. Other activities involved posting new fact sheets, including the latest on women and blood clots and blood clots in children; posting new digital learning modules from a recent Stop the Clot® Forum at Massachusetts General Hospital (made possible by NBCA’s Cooperative Agreement with CDC’s NCBDDD); and  involving NASCAR driver Brian Vickers, who experienced two debilitating blood clots — he spoke out and touted www.stoptheclot.org in a satellite media tour.

These awareness events spurred a dramatic increase in NBCA’s social media followers and boosted unique visitors to the NBCA website to more than 200,000 in March. Visit www.stoptheclot.org to learn how you can help to Stop the Clot®!

New Resource from OAR

The Organization for Autism Research (OAR) is excited toOAR Curriculum Cover Slide announce the availability of its newest resource, the Understanding Autism Professional Development Curriculum. Created in collaboration with the Center on Secondary Education for Students with Autism Spectrum Disorder (CSESA), this comprehensive tool provides middle and high school teachers with the foundational knowledge and evidence-based strategies they need to support students with autism. Ideal for all types of professional development (large group, small group, one-on-one coaching, self-study, etc.), the curriculum includes two 75-minute training presentations with video clips, slide-by-slide notes for facilitators, handouts and activity worksheets to help participants apply learned concepts to their own classrooms. Access the curriculum online or order advance disc copies by contacting Ben Kaufman, Director, Programs and Community Outreach at (703)243-9762 or bkaufman@researchautism.org.

 

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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