January 2012

In This Issue

A Note from the Chair of NCBDDD

News from our Partners
2011 Partners Report 

HRS Congressional Conferees Increase NCBDDD Appropriations

New Findings on the
Causes of Stillbirth

The Amputee Coalition and Minnesota Warriors Ice Hockey Program Join in Partnership 

Disability and Health Journal Celebrates Anniversary

Upcoming Conferences

2012 AMCHP Annual Conference
February 11-14, 2012
Omni Shoreham Hotel
Washington, DC

The 2nd National Conference on Blood Disorders in Public Health
March 12-14, 2012
Westin Atlanta Perimeter North
Atlanta, GA

Upcoming Webinars

Review of FY ’13 Budget Request
Tuesday, February 7
1:30 pm to 2:30 pm (EST)

Please join us as Dr. Coleen Boyle
and other members of the NCBDDD Leadership Team review and analyze
the President’s budget request.
Please hold this date as the time
and date are tentative pending the
scheduled release of the President’s
budget on Monday, February 6.

Communication Mode:
Webinar and Conference Call
*To join by Conference Call,
dial (866) 951-1151
code 8692698.
*To join by Webinar, please register.

Promoting Health and Preventing
Disease for People with Disabilities:
The Unique Role of CDC’s Division
of Human Development and
Disabilities – A Webinar Series

Tuesday, January 24, 2012
4:00 pm to 5:00 pm (EST)

Episode 3: Differences in Health
Status for People with Disabilities

Space is limited. Reserve
your webinar seat now.

Upcoming Course

Breastfeeding Course offering
CERPs and Rx Hours on
NAPNAP’s PNPSourCE

Happy 30th Birthday to HMHB!

The National Healthy Mothers,
Healthy Babies Coalition (HMHB) is celebrating 30 years of service to
maternal and child health – and they
are hosting a virtual party, already underway on HMHB’s Facebook page. Spread the word and consider adding
your own voice to the online
celebration. Here’s how:

“Like” the HMHB FB page

AUCD Staffing Update

Tory Christensen is the new Senior
Project Specialist on the
CDC Cooperative Agreement.

Tory can be contacted at tchristensen@aucd.org or
301-588-8252

Greetings from the Chair of NCBDDD

Roberta S. Carlin, MS, JD, Executive Director, AAHD

Roberta S. Carlin, MS, JD, Executive Director, AAHD

I would like to wish all the Friends of NCBDDD a happy and healthy New Year! 2011 was an exciting year for the Friends of NCBDDD and 2012 is shaping up to be a year of growth, advancement, and collaboration within the three Divisions at NCBDDD and the Friends of NCBDDD. As we move forward into 2012, the Friends of NCBDDD is committed to growing the Friends network, collaborating with partners and ensuring that our partners are continually engaged with the Friends of NCBDDD and the Center. As part of this effort, I would like to take this opportunity to introduce, as well as thank, the members of the Friends of NCBDDD Executive Committee who devote many hours each month to support the broad base work of NCBDDD, disseminate information about the Center and educate constituencies about the valuable work of the Center.

The Executive Committee members for 2012 are as follows:  Roberta Carlin, MS, JD, Chair of Friends of NCBDDD, American Association on Health and Disability (rcarlin@aahd.us); Joseph Canose, MLS, Vice Chair-Friends of NCBDDD, Christopher and Dana Reeve Foundation (jcanose@crpf.org); Clarke Ross, DPA, Chair Friends of NCBDDD Advocacy Coalition, (clarkeross10@comcast.net); Adriane K. Griffen, MPH, MCHES, Chair of Friends of NCBDDD Membership and Communication Committee, Association of University Centers on Disabilities, (agriffen@aucd.org); Emil Wigode, March of Dimes, (ewigode@marchofdimes.com); Alan Brownstein, National Alliance for Thrombosis and Thrombophilia,  (abrownstein@stoptheclot.org); Craig A. Mason, PhD, National Birth Defects Prevention Network, (craig.mason@maine.edu) ; Eileen M. Oulellette, MD, JD, FAAP, American Academy of Pediatrics (eouellet@massmed.org ); Patricia Wright, PhD, MPH Easter Seals, Inc. (pwright@easterseals.com) ; Russell Kirby, Ph.D. University of South Florida, (rkriby@health.usf.edu); Judit Ungar, MSW, National Tourette Syndrome Association (Judit.ungar@tsa-usa.org).

Please feel free to contact any of the Executive Committee members with information or issues you want to bring to the Executive committee’s attention or if you would like to become more involved in the Friends’ activities, including serving on the Executive Committee. The Executive Committee meets monthly via teleconference. For more information on the Friends Executive Committee, please visit the website at www.friendsofncbddd.org.

I also encourage you to visit the Friends website and read the archived newsletters, view archived webinars, and learn about member and Center upcoming activities and initiatives.  Further, each month Friends have the opportunity to place an update/announcement in the “News from Partners” column in the Friends newsletter. The electronic newsletter is a great opportunity to inform your colleagues about meetings, conferences, journal or research announcements, special awards, and learn more about your colleagues and their work. As a Friend, you may also post on the Friends list serve at friendsncbddd@lyrisvs.aucd.org.

Lastly, I would like to report that the Friends of NCBDDD membership begins 2012 with approximately 400 members! In November 2011, the American Public Health Association, Disability Section Executive Council voted unanimously to join the Friends of NCBDDD. We are excited to have this prestigious group become part of our growing network.

Thank you for your membership in the Friends of NCBDDD. I look forward to serving as your Chair and working together in 2012!

Best regards,
Roberta

Roberta S. Carlin, MS, JD
Executive Director
American Association on Health and Disability

News from our Partners

Partners Report for 2011
CDC established a policy requiring External Peer Review of extramural and intramural research and programmatic activities in 2002. The policy, revised this year, gives centers more flexibility in how the reviews are conducted. It requires increased monitoring by the Office of the Director of CDC, and accountability by Centers for implementation of panel recommendations. The objective of the peer review policy is to improve the quality, relevance, and execution of CDC programs. Success of the policy will be measured as actionable recommendations with realistic goals and timeframes that are implemented and lead to improvements in the impact of public health programs. Centers are to select programs that will benefit from peer review, and that are important in terms of the Center missions and the resources they require for implementation. NCBDDD has selected the following programs for peer review over the next five years:  Disability and Health State Programs (2012); Muscular Dystrophy Research and Surveillance (2012); Fetal Alcohol Syndrome Regional Training Centers (2012); Blood Disorders Prevention Research Activities (2012); Centers for Birth Defects Research and Prevention (2013); Prevention of Morbidity and Mortality Related to Deep Vein Thrombosis and Pulmonary Embolism (2014); Centers for Autism and Developmental Disabilities Research and Epidemiology ( 2015).

HRS Congressional Conferees Increase NCBDDD Appropriations
House-Senate Congressional conferees accepted the Senate proposal and increased NCBDDD appropriations from $136.072 million to $138.072 million. The $2 million increase is focused on a new congenital heart disease initiative. An across the board Labor-HHS-Ed discretionary spending reduction of 0.189% is then applied to the final appropriation. The conference report states: “The conferees have rejected the consolidation proposed in the fiscal year 2012 budget for disability initiatives.” The Friends of NCBDDD advocacy coalition will continue to advocate program integrity and adequate funding of NCBDDD.

New Findings on the Causes of Stillbirth
The December 14th issue of JAMA includes two articles from the Stillbirth Collaborative Research Network (SCRN) Writing Group. The SCRN conducted a population-based case-control study of stillbirth. The investigators performed a systematic evaluation into cause of death and identified a probable or possible cause for 76% of stillbirths. The most frequent cause was obstetrical complications (29%). The second most frequent was placental abnormalities (24%). Structural or genetic abnormalities was the third most frequent cause, accounting for 14% of stillbirths. In a comparison with live born controls, multiple factors that could be ascertained at pregnancy confirmation were associated with an increased risk of stillbirth, but these factors accounted for relatively little of the overall burden of stillbirth. In an accompanying editorial, Dr. Jay Iams noted that the association between pregnancy loss before 20 weeks and stillbirth suggests that traditional gestational age boundaries that define pregnancy outcomes such as stillbirth and miscarriage may need to be reconsidered. The National Institute of Child Health and Human Development funded the study. RTI International served as the data coordinating and analysis center, and Drs. Corette Parker and Matthew Koch of RTI were members of the writing group.

The Amputee Coalition and Minnesota Warriors Ice Hockey Program Join in Partnership: Initiative Receives U.S. Olympic Committee Grant  
The Amputee Coalition and the Minnesota Warriors Ice Hockey Program, an ice hockey team of disabled American veterans, have formed a partnership to promote and grow the team. The Minnesota Warriors Hockey Recruitment Initiative, powered by a $20,000 grant from the U.S. Olympic Committee through Veterans Affairs, will be a joint effort to build recognition and recruitment for the team by enhancing marketing, media, and fundraising efforts.

“The Amputee Coalition is proud to join forces with the Minnesota Warriors Ice Hockey Program, an organization that aligns with our goals to educate, integrate and to help people reach their full potential after a loss,” said Kendra Calhoun, president & CEO of the Amputee Coalition. “We thank the U.S. Olympic Committee and Veterans Affairs for awarding this grant, which will be designed to increase recruitment and public awareness so the team can realize their goals for expansion for fundraising to achieve sustainability of the program into the future.”

Disability and Health Journal Celebrates Five Year Anniversary!
In celebration of the 5th Anniversary of the Disability and Health Journal (DHJO), AAHD is offering a special discount of $75.00/year to Friends of NCBDDD. The special anniversary rate will allow you to receive a hard copy of the peer reviewed and Medline indexed DHJO, and also have electronic access to the DHJO.  Please visit  www.aahd.us/membership to join AAHD and receive the discount! (Indicate $75.00 anniversary special rate on membership form).  In addition, a new Journal website was created as part of the anniversary celebration. Please visit the DHJO website at www.disabilityandhealthjnl.com to learn more about the Editorial Board, Submissions and DHJO information.

Upcoming Conferences

The 2nd National Conference on Blood Disorders in Public Health
March 12-14, 2012
Westin Atlanta Perimeter North
Atlanta, GA

The purpose of this conference is to further advance the public health context described during the 1st National Conference on Blood Disorders in Public Health (March 2010) and to promote the adoption and full integration of evidenced-based and evidenced-informed public health functions that are capable of promoting the health of and improving outcomes among people with a blood disorder. This conference is being held in conjunction with the Conference of the Global Sickle Cell Disease Network (scheduled for Thursday March 15, 2012) and the 2nd Meeting of the Worldwide Initiative on Social Studies on Hemoglobinopathies (WISSH – scheduled for Friday March 16, 2012). Announcements and calls for abstracts for these two meetings will be posted separately. For more information, please visit: http://blooddisordersconferences.com/

2012 AMCHP Annual Conference
February 11-14, 2012
Omni Shoreham Hotel
Washington, DC

The theme for the 2012 Association of Maternal & Child Health Programs (AMCHP) Conference is Improving Maternal and Child Health Across the Life Span: Acting Today for Healthy Tomorrows. Conference attendees will acquire valuable information about new federal and foundation funding for MCH programs, discuss emerging issues related to health care reform and its implementation, learn how states are tackling current economic and workforce challenges, and participate in many opportunities to collaborate, connect, share and learn.

Conference attendees can choose from more than 100 sessions and events that will help expand skills, broaden knowledge of new developments in the field, and provide practical tools and information. Conference sessions are designed to educate and motivate while emphasizing the impact of programs in states and communities nationwide, exploring the critical life-span approach to optimizing the health of women and children. The conference offers innovative presentations on a wide range of MCH topics following Life Span, Action, and Making the Case for MCH tracks.

Great content, combined with ample time to network with approximately 700 attendees from across the states and territories and more than 50 sponsors and exhibitors, makes the 2012 AMCHP Annual Conference an unparalleled professional development opportunity. For more information, visit www.amchp.org/calendar/conferences/amchp-conference.

Upcoming Course

Breastfeeding Course offering CERPs and Rx Hours on NAPNAP’s PNPSourCE
Breastfeeding and Medications, an online interactive learning experience discussing current concepts regarding the use of medications during breastfeeding, is approved for 1.0 L CERPs by the IBLCE and offers 1.0 NAPNAP contact hour (with Rx designation). Visit PNPSourCE at www.napnapce.org today!

AUCD Staffing Update

Tory Christensen is the new Senior Project Specialist on the CDC Cooperative Agreement. She recently relocated to Washington, DC from Iowa City, IA. Tory has a bachelor’s degree in Speech and Hearing Science, a master’s degree in Social Work, and has just completed coursework to become a Board Certified Behavior Analyst. While in Iowa, she spent almost nine years working at the University of Iowa’s Center for Disabilities and Development, which is designated as Iowa’s UCEDD. A great portion of her time was spent working as a behavior analyst during her employment there. She was also a LEND trainee while at the University of Iowa. Tory is excited to be joining the CDC team and working to support Friends! Tory can be contacted at tchristensen@aucd.org or 301-588-8252.

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