March 2013

In this Issue

NCBDDD Quarterly Report

Parent Corner

News from the
Friends of NCBDDD

Friends of NCBDDD Member
Communications Survey

News from NCBDDD
Venous Thromboembolism
Grand Rounds

Disparities in Tobacco Use
Among People with Disabilites

News from our Partners
New DVD Brings Autism
Education to Life for Teachers

Congenital Heart
Advocacy Day 2013

The American Academy
of Audiology Celebrates
25 Years

2013 International Research
Conference on TSC and
Related Disorders:
Molecules to Medicines

ACHA Webinar – Thriving
with Congenital Heart
Disease: 10 Things
Every Patient Should Know

Upcoming
Conferences & Events

AFB’s 2013 Leadership
Conference

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

2013 International Research
Conference on TSC and
Related Disorders:
Molecules to Medicines

NACCHO Annual
July 10-12
Dallas, TX

Upcoming Webinars
& Webcasts

Public Health Grand Rounds
Reducing Teen Pregnancy
in the United States

March 19, 1 pm EDT
Watch via Webcast: www.cdc.gov/about/
grand-rounds

Revising the ICD Definition
of Intellectual Disability:
Implications &
Recommendations

March 19, 3 pm EST

Click here to register

 

ACHA Webinar
Thriving with Congenital
Heart Disease: 10 Things
Every Patient Should Know
March 28, 7 pm EDT

Click here to register

Funding
Opportunities

OAR Applied Research
Competition
 – Deadline: 4/5

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 April 5, 2013.
Photos and web links are
encouraged!

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
Co-Chair
Melissa Putman,
Advocacy Coalition Co-Chair
Roberta Carlin,
Past Chair

NCBDDD’s Social
Media Corner

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

Dr. Coleen Boyle
Dr. Althea Grant
Susanna Visser

Follow NCBDDD
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

Quicklinks

NCBDDD

Join the Friends of
NCBDDD Listserv

NCBDDD Quarterly Report

Coleen A. Boyle, PhD, MS Hyg Director, NCBDDD

Dear Friends,

It’s been an exciting first quarter for NCBDDD. We were proud to sponsor two CDC Grand Rounds presentations on disability inclusion and venous thromboembolism (VTE). The first, Where in health is disability? Public health practices to include people with disabilities, explored opportunities for optimal quality of life for individuals with disabilities. This session included presentations from: Gloria Krahn, Division of Human Development and Disability; Monika Mitra, University of Massachusetts Medical School; Jennifer Hootman, National Center for Chronic Disease Prevention and Health Promotion; Catherine Leigh Graham, University South Carolina School of Medicine; and Georges Benjamin, American Public Health Association (APHA). After the presentation, Dr. Frieden sat down with Gloria Krahn and Georges Benjamin, Executive Director of APHA, to talk about how our organizations can include people with disabilities in health programs and services. If you’d like to follow the conversation, it was captured in a CDC Public Health Matters Blog: http://blogs.cdc.gov/publichealthmatters/2013/01/4994/.

The second Grand Rounds session, Prevention of Venous Thromboembolism (VTE), explored the public health importance of VTE and the role of providers and patients in the prevention of VTE. This session included presentations from:  Althea Grant, Division of Blood Disorders; Michael B. Streiff, Johns Hopkins Medical Institutions; and P. Jeffrey Brady, Agency for Healthcare Research and Quality. For more information, or to view these presentations and the presentations conducted as a part of the disability Grand Rounds in their entirety, please visit the Grand Rounds Archive Section.

In recent months, we’ve had some leadership changes at NCBDDD. We’re excited to announce that Stephanie Dulin has been appointed as the Center’s Deputy Director, Dr. Stuart Shapira as our Center’s Medical Officer and Associate Director of Science, and Jennifer Meunier as the Associate Director for Policy in the Division of Human Development and Disability (DHDD). Stephanie brings over 25 years of public health programming experience at the local, state and federal levels of government. Stuart, a pediatrician by training, is board certified in Clinical Genetics, Biochemical Genetics, and Molecular Genetics, and brings a wealth of knowledge on a wide range of issues from genetics to birth defects. Jennifer comes to us from CDC’s Office of the Director where she’s worked for several years as a public health analyst directly with Drs. Thomas Frieden and Ileana Arias.

Finally, with spring upon us, we look forward to renewing our ties with national partners through our partner engagement meetings. The spring meetings will be focused on improving program information exchange and identifying new collaboration opportunities for 2013. We are committed to improving the communication between our programs and our national partners. These meetings, as well as the fall budget planning meetings, will advance that effort and improve our collective capacity to address the serious public health challenges facing our constituent communities.

We look forward to an exciting second quarter of collaboration with the Friends of NCBDDD.

Coleen signature

Coleen Boyle, PhD, MS Hyg
Director, National Center on Birth Defects and Developmental Disabilities,
Centers for Disease Control and Prevention

Parent Corner

beckettFamilies of persons with autism often have to navigate through several different systems of care and several support organizations to get the care they need. This fragmentation of care can cause a lot of frustration for families and can delay the early identification of autism and other developmental disabilities. As a parent, I am pleased to know that the CDC is doing more to understand the barriers that cause disparities in how quickly a child with autism is identified.

Families of people on the autism spectrum primarily reach out to local and state support groups. Parent training, information centers and family-to-family health information centers are located in every state while parent-to-parent organizations  are in most states. These organizations assist in information and referral, and provide various support groups to assist families. SAMHSA has supported systems of care projects across the country that coordinate care for those with serious emotional and behavioral challenges such as children and young adults on the autism spectrum.

Larger groups of those on the autism spectrum such as individuals diagnosed with Rett Syndrome, Asperger Syndrome or Pervasive Developmental Disorder have formed their own support networks, and some have national organizations. Other organizations such as Easter Seals and The Arc distribute information to families as well. These organizations are often service providers and/or have day care programs for both children, young adults and in some cases, the elderly.

Over the course of this year, NCBDDD will be working with partners to better understand disparities in identification.  They’ll be working with the Autism and Developmental Disabilities Monitoring  (ADDM) Network sites to explore how states are addressing disparities in the identification of autism and how providers and families are working to meet the growing need for services in their communities. We hope to identify the most important strategies being used and share them with other states. We need to learn together how best to serve families.

Julie Beckett

News from the Friends of NCBDDD

Friends of NCBDDD Member Communications Survey

The Friends of NCBDDD Executive Committee is working on communication plans for exploring ways to support more dynamic communications efforts with NCBDDD and with each other. Please take this quick survey so that we may better address your needs: http://www.surveymonkey.com/s/Friends_Communication_Survey. If you have any questions, please feel free to contact Jeff Cohen (j.cohen@fragilex.org), Member and Communications Chair. We would appreciate your response by March 28, 2013.

News from NCBDDD

Venous Thromboembolism Grand Rounds

“Preventing Venous Thromboembolism” was the topic of CDC’s Public Health Grand Rounds that took place on January 15, 2013. This explored Venous Thromboembolism (VTE), which consists of two related conditions caused by blood clots: Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE). Estimates of the number of people in the U.S. affected by VTE each year range from 300,000-900,000, with up to 100,000 dying as a result, and 20-50% of people who experience a DVT develop long-term complications. Up to one-half of all VTEs occur during or soon after hospitalizations, and VTE is one of the most frequent serious adverse events in hospitals. Many VTEs can be prevented if hospitals educate providers and patients, systematically assess risks for clotting and bleeding, and prescribe risk-appropriate prevention strategies. VTE prevention is an important component of hospital patient safety improvement efforts that are being supported by a number of organizations and Federal agencies. A comprehensive public health approach to VTE prevention includes activities to develop monitoring systems to evaluate and ensure widespread adoption of effective prevention strategies. For more information review the VTE Grand Rounds

Disparities in Tobacco Use Among People with Disabilities

Tobacco use is the leading preventable cause of death in the United States. Annually, one in five deaths is attributed to smoking cigarettes. Adults with disabilities are more likely to smoke cigarettes than adults without disabilities. According to CDC’s Morbidity and Mortality Report, an estimated 19.0% of U.S. adults were current cigarette smokers in 2011. Tobacco use was significantly higher among those who reported having any disability (25.4%) compared to those who reported having no disability (17.3%). The higher prevalence of smoking among adults with disabilities means that this population is at increased risk of death and disease. Evidence shows that access to comprehensive tobacco control programs can reduce smoking rates, tobacco-related deaths, and diseases caused by smoking. CDC-funded State Disability and Health Programs are working to improve the health and wellness of people with disabilities by including them in health activities targeted at the issue of smoking. They are also identifying and targeting smoking cessation in ways that include people with disabilities who may not be receiving these messages through existing campaigns or current programs. For additional state-based data on people with disabilities, visit the DHDS website.

News from our Partners

New DVD Brings Autism Education to Life for Teachers

A recent study found that more than one-third of general OAR Logoeducation teachers received no formal special education training. To address this concern, the Organization for Autism Research (OAR) worked in partnership with Fairfax County (VA) Public Schools to develop a research-based training tool that prepares middle and high school teachers to provide effective support for their students on the autism spectrum.

OAR is excited to announce the public release of Understanding Autism: A Guide for Secondary School Teachers, a dynamic, hour-long DVD comprised of four modules that support both group and individual learning:

1)       Characteristics of Autism
2)       Integrating Supports in the Classroom
3)       Practices for Challenging Behavior
4)       Effective Use of Teacher Supports

The DVD is built on the contributions of real teachers, parents, students, and autism experts. You can view the full press release here. For more information, to obtain a hard copy, or to inquire about using this resource in your school district, please contact Ben Kaufman, Director, Programs and Community Outreach at (703) 243-9762 or bkaufman@researchautism.org.    

Congenital Heart Advocacy Day 2013

acha logoMore than 100 advocates will be traveling to Washington, D.C., to visit their lawmakers on March 19, 2013, for Congenital Heart Advocacy Day. Advocates (including those with congenital heart disease, their families and friends, and the medical community) will gather March 18 for a day of training and fellowship with a reception and recognition presentation that evening. Participants will be asking their Members of Congress to support NIH research funding and CDC surveillance efforts. In addition, they will be recruiting Members for the Congressional Congenital Heart Caucus. Thank you to the hundreds of congenital heart patients, families and medical professionals from around the country who continue to make their voices heard on behalf of congenital heart disease, the congenital heart disease researchers and clinicians who provide input to guide our efforts, and the many advocacy experts who shine the light on our path. For more information about the advocacy efforts at the Adult Congenital Heart Association, please contact Amy at abasken@achaheart.org.

Group at Capitol

Advocates from last year’s event, including ACHA President/CEO Amy Verstappen and ACHA Medical Advisory Board Vice Chair Curt J. Daniels, MD, take a quick photo break at the Capitol before meeting with their legislators.

The American Academy of Audiology Celebrates 25 Years

The American Academy of Audiology is excited to celebrate itsaaa3 25th anniversary at their upcoming annual convention and exposition, AudiologyNOW!® which draws an annual audience of over 7,000 practicing audiologists, scientists, doctoral students and related representatives. The Academy is the world’s largest professional organization of, by, and for audiologists. The active membership of more than 11,000 is dedicated to providing quality hearing care services through professional development, education, research, and increased public awareness of hearing and balance disorders. Their mission is to promote quality hearing and balance care by advancing the profession of audiology through leadership, advocacy, education, public awareness, and support of research. Some of the highlights of this year’s convention will include the 5th Annual Academy Research Conference which will bring together clinicians and researchers to further learn about the importance of hearing with both ears. In addition, a specialty conference will be held which will address expanding indications for cochlear implants in infants, and the Marion Downs Lecture will be given by the esteemed Dr. Richard Seewald, who will discuss the development of a science-based approach to pediatric hearing aid fitting. For more information please visit: www.audiology.org or www.audiologynow.org.

2013 International Research Conference on TSC and Related Disorders: Molecules to Medicines

2013%20Res%20Conf%20Logo%20WebThe Rothberg Institute for Childhood Diseases, in collaboration with the Tuberous Sclerosis Alliance, is pleased to present the 2013 International Research Conference on Tuberous Sclerosis Complex and Related Disorders: Molecules to Medicines. The conference will take place at the Omni Shoreham Hotel in Washington, D.C., June 20-23, 2013. Please visit the conference website for information about registration, abstract submission for travel awards, platform presentations and posters. Contact Katie Smith at ksmith@tsalliance.org for additional information.

ACHA Webinar – Thriving with Congenital Heart Disease: 10 Things Every Patient Should Know

What is the most common heart defect? Who is the oldest person living with my defect? How do people with CHD do in theacha logo long run? What things should I make sure I ask my cardiologist? What are ways I can protect myself from mistakes in my medical care? How can I make a difference in my health? These questions and more will be answered in Thriving with Congenital Heart Disease: 10 Things Every Patient Should Know. Combining key CHD research, member input, and her ownexperiences navigating life with complex CHD, ACHA President/CEO Amy Verstappen, will share her top tips on thriving with CHD. Although the goal of the webinar is to empower patients to better understand and managetheir CHD, family members are also welcome to attend.

This webinar will take place on Thursday, March 28, from 7:00-8:00 pm EDT. Click here to register!

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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