August 2012

In this Issue

News from NCBDDD
September is Emergency Preparedness Month

NCBDDD Connects with the Community Site Visit

Newborn Screening Awareness Month Activities

20th Anniversary of the
U.S.P.H.S. Recommendation
for NTD Prevention

News from our Partners
New Resources Available
from NCMHI

Announcing New 2012
CURE Grant Recipients

Lakeshore to London: A Unique Health Promotion Program


2012 APHA Disability Section
Annual Meeting Scholarships
*Deadline: September 12, 2012

AAHD Scholarship Program
*Deadline: November 15, 2012

Upcoming Events

National Forum
on Disability Issues

September 28, 2012
Columbus, OH
*Registration now open!
Follow on facebook & Twitter!

2012 International Conference on
Stillbirth, SIDS and Infant Survival

October 5-7, 2012
Baltimore, MD

2012 Southwest
Conference on Disability

October 9-12, 2012
Albuquerque, NM

AMTA 2012 Annual Conference
October 11-14, 2012
St. Charles, IL

2012 APHA Annual Meeting
October 27-31, 2012
San Francisco, CA

American Society of Human
Genetics 62nd Annual Meeting

November 6-10, 2012
San Francisco, CA

CHADD Annual International
Conference on ADHD

November 8-10, 2012
San Francisco, CA

2012 AUCD Annual Meeting
December 1-5, 2012
Washington, DC

Friends of NCBDDD Meeting
December 1-5, 2012
Washington, DC

Proposal Deadlines

AMCHP Annual Conference
August 24, 2012

CEDR National Conference
October 15, 2012

Upcoming Webinars

Don’t Know Much About
the Affordable Care Act?
A Webinar for Women
with Disabilities

August 22, 3:00-4:00 pm ET

Time Out for Genetics:
Heard About Genetic
Counseling? What Does it
Mean for You, Patients,
and Families?
August 30, 12:00-12:30 pm CT

Available Course

2012 Immunization Update
Archived from the NAPNAP
2012 Annual Conference.

1 contact hour/1 Rx hour offered.
Visit PNPSourCE for more information.

August is National Immunization Awareness Month, highlighting the need for improving national immunization coverage levels and to encourage all people to protect their health by being immunized against infectious diseases.

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 September 14, 2012. Photos and web links
are encouraged!



Join the Friends of
NCBDDD Listserv

News from NCBDDD

September is Emergency Preparedness Month

Through our partner meetings over the summer, NCBDDD partners identified emergency preparedness as a cross-cutting concern. In response, NCBDDD has identified several emergency preparedness resources for people with disabilities. Thanks to Roberta Carlin of AAHD for sharing some of these great resources.  We’re planning to make this information available and we’re working to develop ideas about how to best promote the emergency preparedness needs of people with disabilities. Stay tuned for an invitation to participate in an emergency preparedness twitter chat being planned for late September!

AAHD’s “Annotated Bibliography on Emergency Preparedness and Response for People with Disabilities” provides information on many target populations (click on the link below to see the Table of Contents). Thank you to Roberta Carlin of AAHD for sharing this valuable resource.

DHHS Office of the Assistant Secretary for Preparedness and Response (ASPR): There is a wealth of resources for people with disabilities in disasters under ASPR’s Division of At-Risk, Behavioral Health, and Community Resilience. Click on the link below to learn more:

NCBDDD Connects with the Community Site Visit

NCBDDD will be conducting a site visit to New York, August 22 and 23. This Center-wide site visit offers an opportunity to increase NCBDDD’s presence in working with state and local health departments and within communities. The site visit will not merely be a program review but a “listen-and-learn” from persons on the front-line about issues, challenges, and solutions. Through this event, NCBDDD will review not only successes and accomplishments but also identify challenges within its programs/projects in order to effect positive change within the populations and communities it serves.

Newborn Screening Awareness Month Activities

NCBDDD and NCEH will recognize Newborn Screening Awareness Month throughout September with various features, social media messages, and other communication platforms. The goal of these activities is to educate expectant/new parents about the importance of newborn screening.

20th Anniversary of the U.S.P.H.S Recommendation for NTD Prevention

September 2012 marks the 20th anniversary of the U.S. Public Health Service recommendation that all women capable of becoming pregnant should consume 400 micrograms (mcg) of folic acid daily to help prevent NTDs. CDC is planning a series of communication pieces for the anniversary documenting the public health success story of folic acid in the U.S. and highlighting new global efforts.

News from our Partners

New Resources Available from NCMHI

The National Center for Medical Home Implementation (NCMHI) has developed two new video tutorials to highlight the valuable tools and resources it has developed to assist individuals interested in ensuring that every child and youth has a medical home.

  • Medical Home Information Website
    The website is the clearinghouse for information and tools regarding the medical home approach to care in the pediatric setting. To help you understand all there is to find on the website, the NCMHI has developed a brief video tutorial that describes the six sections of the website, as well as the practical resources available for primary care providers and families.
  • Building Your Medical Home Toolkit
    The NCMHI has also developed a video tutorial for its FREE online toolkit. The tutorial walks users through the six building blocks of the toolkit, as well as the various tools available. The toolkit supports the primary care practitioner’s development and improvement of a pediatric medical home.

NCMHI staff is available to help you find what you need. Fill out the Contact Us form for assistance. The NCMHI is a cooperative agreement between the American Academy of Pediatrics and the Maternal and Child Health Bureau.

Announcing New 2012 CURE Grant Recipients

Citizens United for Research in Epilepsy (CURE) is thrilled to introduce our second wave of research award recipients for 2012! The overarching goal of CURE’s research program is to facilitate groundbreaking research that will lead to “no seizures, no side effects” and ultimately, a cure, by investing in cutting-edge research ideas. These innovative projects show great promise; they will lead the way to new therapies and cures for epilepsy. To read about our newest grantees and their studies, click here!

Please stay tuned for future announcements. Awards in our new, targeted initiative in Infantile Spasms (a childhood epilepsy syndrome with potential for profound developmental and cognitive consequences), and our annual Taking Flight (for young investigators) and Innovator grant mechanisms will be announced later this year.

Lakeshore to London: A Unique Health Promotion Program

Alabama’s Lakeshore Foundation provides  fitness, recreation, sport and research programs to individuals with physical disabilities and chronic health conditions, ages six months and older. In 2003, Lakeshore was named a United States Olympic Committee Training Site to serve Olympic and Paralympic athletes. Since this time, Lakeshore has held over 100 camps and events, serving thousands of hopefuls.

In 2012, Lakeshore athletes will join Paralympians from around the world at the Olympic and Paralympic Games in London. Lakeshore has used this opportunity to promote the Paralympic Games, along with health and wellness, and has created a health promotion program for members called,Lakeshore to London. Swimming the English Channel (aquatics), Full Monty Fitness (fitness), and Kids on the Move (youth) are all Lakeshore to London initiatives that offer incentives to members. Lakeshore President Jeff Underwood said, “Lakeshore is proud of our vision – to improve the lives of people with physical disability around the world. Our Lakeshore to London initiative provides an excellent opportunity to do this on multiple platforms.”

The Paralympic Games open on August 29th. Aimee Bruder (swimming), Jennifer Schuble (cycling), Josh Roberts (athletics), Mary Allison Milford (basketball), and Delvin McMillian (wheelchair rugby, alternate) will represent Alabama. Click here to follow the Games!

Upcoming Events

AMTA Association 2012 Annual Conference

October 11- 14, 2012
Pheasant Run Resort
St. Charles, IL

The music therapy event of the year will focus on the winds of change, new directions, innovations, and new answers for both professionals and students engaged in music therapy. Explore science and song. Discover research, rhythm, and blues you can use. Share strength in numbers, in harmony and in humor. Learn advocacy and business savvy. Expand your therapy skills. Grow and be inspired by legends with a FREE Institute devoted to the legacy of Clive Robbins. Intensive learning experiences are featured in Pre-conference Institutes on Multiculturalism, Business and Hospice. Training in NMT, GIM, Music Therapy Drumming and NICU will be offered, plus you will reap the benefits of over 200 educational sessions giving attendees new tools, best practices, practical information and a fresh approach to music therapy practice and research. Let the wind take you to the hottest topics, trends, and compelling educational sessions. The 2012 conference will offer outstanding networking opportunities for you to meet and connect with the best and brightest. You will delight in sharing music with 1,500 fellow music therapists!

2012 AUCD Annual Meeting

December 2-5, 2012
Washington Hilton
Washington, DC

Rapid developments in technology and science result in a constant flow of new and emerging information in medicine, health care, social services, education, policy, research practice, and communication systems. The 2012 Association of University Centers on Disabilities (AUCD) Conference is a unique forum to share innovations and promising practices across a broad array of topics that ultimately impact the quality life for people with disabilities and their families in their communities. Join AUCD on December 2-5, 2012 at the Washington Hilton in Washington, DC to learn and share today’s promising practices and innovations that shape the lives of people with disabilities and their families through research, policy, education, and service. Early registration is open through October 14, 2012.

Friends of NCBDDD In Person Meeting

December 5, 2012
Washington Hilton
Washington, DC

The Friends of NCBDDD will hold an in person meeting on December 5, 2012, 2pm-4pm, in conjunction with the AUCD meeting in Washington, DC.  Mark your calendar to join leadership of the Center and the Friends Executive Committee.  Results of our upcoming Executive Committee election will be announced during the meeting. More details and an agenda will be forthcoming. We hope to see you then!

New TIGRR Workshop Offered

January 15-19
Rizzo Conference Center
Chapel Hill, NC

The Training in Grantsmanship for Rehabilitation Research (TIGRR), building on 10 years of workshops, will be offered in January 2013 at the University of North Carolina, Chapel Hill. This offering is based upon a 10 year history of successfully providing mentorship to approximately 300 Junior and mid-level faculty from throughout the North America and in several foreign countries.

The upcoming intensive NIH supported grant writing workshop builds upon the successful model used by the Enhancing Rehabilitation Research in the South (ERRIS) workshops that resulted in many junior investigators receiving NIH and NIDRR level research funding. Unlike passive seminars on grant writing, selected mentees will come prepared to complete at least the specific aims for a grant proposal for submission to the NIH or other funding agency.

Please share this with your colleagues and faculty. For more information, click here.

CEDR National Conference

March 11-12, 2013
Sheraton Crystal City
Crystal City, VA

Mathematica Policy Research is soliciting research abstracts to be presented at the Center of Excellence on Disability Research (CERD) National Conference.  The conference will present important new research findings on care coordination and integration of care for people with disabilities and is intended for policy makers, program operators, service providers, researchers, and others with an interest in such research.

CEDR is seeking research that examines how new interventions, care delivery models, financing arrangements, and health information technology (HIT) focused on care coordination and/or integration of care can improve the quality of care, qualify of life, and health outcomes for people with disabilities. Populations of interest include people with disabilities of any age with various types of disabilities and sources of health care coverage.

Abstract submissions are due October 15, 2012, and registration will open in September. For more information, visit the conference website.

Scholarship Opportunity

2012 APHA Disability Section Annual Meeting Scholarships

The Disability Section of the American Public Health Association (APHA) is excited to announce a minimum of four $1000 conference travel scholarships to attend the 2012 APHA Annual Meeting, October 27-31, in San Francisco, CA. This year’s APHA Annual Meeting theme, Prevention and Wellness Across the Lifespan, presents an opportunity to discuss the impact prevention and wellness have on physical and mental health at all ages. The Disability Section will conduct a Section meeting and a series of breakout scientific sessions that will address a range of disability and health topics. This is a great opportunity to learn and discuss critical issues in public health and health disparities related to disability!

All graduate students focusing their studies on disability and health at U.S. universities are eligible. Applicants should submit a statement of interest, not exceeding two pages; a curriculum vitae or resume; and a letter of recommendation. Email documents to Dot Nary at by September 12, 5:00 PM CT. Winners will be notified via email by 9/30/12.

Scholarship recipients are required to document their experience at the conference and share it with trainees across the Disability and Health network by submitting a 300 word article for the APHA Disability Section Newsletter, accompanied by a photo of him or herself.

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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