May 2011

News from the Friends of NCBDDD
NCBDDD FY11 Budget

CDC recently released the final FY2011 budget. The Agency was required to absorb an 11% reduction in its base budget from FY2010 funding levels. Every part of CDC experienced budget reductions for FY2011 including NCBDDD. The final FY2011 NCBDDD operating budget is $136 million or $7.5 million below FY 2010. This 5% reduction included significant across the board budget reductions as well as the elimination of three NCBDDD programs:  Charcot Marie Tooth Disorders, Alveolar Capillary Dysplasia, and Diamond Blackfan Anemia. These reductions resulted in NCBDDD’s operating budget reverting back to FY2008 levels. The rationale used to identify these reductions focused on:

•         Consistency with National Center priorities;

•         Consistency with Agency priorities;

•         Demonstrated impact of public health programs; and

•         Equitable reductions across broad programmatic activities.

President’s FY12 Budget Consolidation Proposal

Reflecting the Center’s commitment to gaining partner input on the proposed budget consolidation proposal, NCBDDD hosted a series of meetings with funded partners over the past few weeks in Washington, DC. The Division of Human Development and Disability (DHDD) hosted a meeting on April 14, the Division of Blood Disorders on May 5, and the Division of Blood Disorders on May 19. During these discussions, Center leadership shared draft copies of the transition plan that outlined how NCBDDD planned to consolidate disparate funding cycles and streamline funding announcements. Copies of this document as well as other relevant background materials will be made available online shortly. In addition, a facilitated discussion focused on better understanding partner’s concerns about the proposal and exploring suggested modifications to it. Information from these discussions will assist the Center in making revisions to the final transition plan that will be shared with the Administration and Congress later this year.  Additional meetings are being scheduled with the autism partners and birth defects research grantees and a second meeting with the DHDD partners is scheduled for May 26. Likewise, NCBDDD will be inviting all participants to a follow-up meeting on August 12 (scheduled in conjunction with the “Partner Open House”), in Atlanta, Georgia, where NCBDDD leadership will share with partners the revised transition plan and solicit final comments from them.

10 Years of Service Updates

Autism Field Event – NCBDDD hosted another successful 10 Years of Service event on April 29. The event was jointly sponsored by Autism Speaks and The Autism Society at the Children’s Specialized Hospital in New Brunswick, New Jersey.  Representatives Chris Smith and Frank Pallone were in attendance and provided remarks. In addition, Senator Menendez’s Deputy Chief of Staff, Kellie Drakeford LeDet participated in the program and read a letter on behalf of the Senator who was unable to attend because of previous commitments. NCBDDD Director Dr. Coleen Boyle and Marshalyn Yeargin-Allsopp provided an overview of NCBDDD’s autism work and the audience heard from parent and community advocates as well. Peter Bell, Autism Speaks, and Jeff Sell, The Autism Society, gave remarks that furthered stressed the continuing challenges faced by the autism community and the important role NCBDDD plays in helping advance the knowledge base. Mary O’Dowd, New Jersey’s Acting Health Commissioner and Amy Mansue, CEO of the Children’s Specialized Hospital, also were part of the event and provided important perspectives on the impact of autism at the state and local levels. View Event Slideshow

Partner Open House – NCBDDD will be hosting a “Partner Open House” on August 11, in Atlanta, Georgia. The open house will provide an opportunity for partners to hear updates from CDC and NCBDDD leadership and meet with program staff from every division. Planned activities also include interactive sessions with the CDC Foundation, CDC’s Procurement and Grants Office, and opportunities to network with other NCBDDD partners.

NCBDDD Connects with the Community- This event is tentatively scheduled for August 24-25, in Denver, Colorado, and will focus on highlighting NCBDDD’s connection to state and local public health as well as the university research community. In addition, listening sessions and interactive panel discussions will be scheduled to gain feedback on NCBDDD program and activities from a broad array of health and public health professionals, non-profit and advocacy organizations, policy and funding organizations.

Sickle Cell Disease Field Event – NCBDDD, in collaboration with the Sickle Cell Disease Association of America (SCDAA) will be hosting an event entitled, “Closing the Survival Gap,” on September 30, in conjunction with the SCDAA’s annual convention in Memphis, Tennessee. The event’s focus will be to raise awareness about the critical role NCBDDD’s public health activities play in understanding the affected population and the need for more effective tools to help people with sickle cell disease live full and productive lives.

Closing Reception – Planning is currently underway for a closing reception for the 10 Years of Service events and programs. The reception will be held in conjunction with the American Public Health Association’s annual conference in Washington, DC, and is tentatively scheduled for November 1. The exact time and location will be provided soon.

News from the Friends of NCBDDD Advocacy Coalition
Friends Advocacy Coalition Presentation to the National Health Council

On May 5, Friends Advocacy Coalition chair Clarke Ross presented the President’s FY 2012 NCBDDD proposed budget to the National Health Council (NHC) Appropriations Issue Team. Clarke used the Administration’s “Congressional Justification” document which requested level funding for the Center, an increase in the autism initiative and a corresponding decrease in other NCBDDD initiatives, and identified 19 proposed NCBDDD mergers and consolidations (4 in the Child Health and Development division, 11 in the Health and Development for People with Disabilities division, and 4 in the Public Health Approach to Blood Disorders division). Many of the NHC issue team members are voluntary health agencies involved with the President’s proposed CDC National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) merger proposals. Some of the NCBDDD Friends are NHC members.

News from our Partners
New Study Reveals Autism Prevalence in South Korea Estimated to be 2.6% or 1 in 38 Children

In the first comprehensive study of autism prevalence using a total population sample, an international team of investigators from the U.S., South Korea, and Canada estimated the prevalence of autism spectrum disorders (ASD) in South Korea to be 2.64%, or approximately 1 in 38 children, and concluded that autism prevalence estimates worldwide may increase when this approach is used to identify children with ASD. “Prevalence of Autism Spectrum Disorder in a Total Population Sample,” published today online in the American Journal of Psychiatry reports on a study of all children (approximately 55,000) ages 7-12 years in a South Korean community, including those enrolled in special education and the disability registry, as well as all children enrolled in general education schools. Children were systematically assessed using multiple clinical evaluations.  View Autism Speaks Press Release.

Diamond Blackfan Anemia Chosen as Focus of Esteemed Hematology Journal

Seminars in Hematology, has chosen Diamond Blackfan Anemia (DBA) as the focus for its current issue, titled: Diamond Blackfan Anemia and Ribosome Biogenesis Vol 48, No 2, April 2011.  The Daniella Maria Arturi Foundation for DBA  is also proud to announce that featured within the journal’s DBA issue is the article, “Patient Advocacy in Diamond Blackfan Anemia: Facilitating Translational Research and Progress Towards the Cure of a Rare Disease” authored by Marie Clarke Arturi, Executive Director of the Daniella Foundation.  DBA and Arturi’s patient advocacy efforts are also highlighted in the most recent issue of Cell Stem Cell, Volume 8, Issue 5, May 6, 2011, titled: “Patient Advocates: Advancing Research from outside the Lab”.  As a genetic disorder of red cell production and ribosome biology, the careful dissection of DBA is yielding valuable insights into the biology of blood disorders, blood cell formation, and cancer predisposition, as well as the genetics of birth defects and the effectiveness of treatment options for all bone marrow failure syndromes.  More Information

NAPNAP Position Statement on Pediatric Nurse Practitioners’ Role in Disasters Involving Children

The Position Statement calls for the inclusion of PNPs in disaster plans to help ensure that children and families have access to the necessary services to assist them in their immediate and long-term recovery.  NAPNAP supports the role of the PNP as leaders during mass casualty incidents (MCI). The Position Statement supports National training and advocacy efforts at the local, state, and federal levels to ensure there are adequate health care providers available to help alleviate the effects on children during disasters. The Position Statement also calls for NAPNAP member involvement in local, state and national disaster preparedness efforts to ensure there is appropriate equipment for the care of children.

Updated AMCHP Fact Sheet on State Birth Defects Performance Measures

The Association of Maternal and Child Health Programs (AMCHP) recently reviewed the Title V Information System to identify states that have adopted performance measures related to birth defects surveillance. This updated fact sheet highlights innovative and effective ways that state Title V agencies utilize birth defects surveillance systems to improve maternal and child health.

Robert B. McLafferty, MD Named President, Vascular Disease Foundation

Dr. Robert McLafferty was elected president of the Vascular Disease Foundation (VDF) board of directors at their meeting held on March 25th in Chicago, IL. Robert B. McLafferty, MD serves as a Professor in the Division of Vascular Surgery in the Department of Surgery at the Southern Illinois University School of Medicine.  Dr. McLafferty has been a member of VDF’s board of directors since April 2005 and previously served on the Venous Disease Coalition’s steering committee as treasurer. In his new role as president, Dr. McLafferty will continue to lead efforts to increase awareness of vascular disease which affects over 40 million Americans. 

ACA Limb Loss Awareness Month Recap

The Amputee Coalition exceeded its goals for “April is Limb Loss Awareness Month,” receiving extensive support group participation and nationwide media coverage.   The organization’s goal for the month was to increase awareness about limb loss prevention and about those living with limb loss.  The culmination was a three month limb loss prevention message, sponsored by an educational grant from Otto Bock HealthCare, on Clear Channel’s streaming billboard in Times Square. Amputee Coalition support groups around the country held local awareness and fundraising events.  These activities received media coverage in numerous markets including Knoxville, the Amputee Coalition’s headquarters.  Over 13,000 people (a preliminary count) visited the Amputee Coalition’s Limb Loss Awareness Website, and hundreds took the limb loss awareness risk assessment.  ACA encourages you to check out the local and national coverage. 

Partner Conferences

Spina Bifida Association’s 38th National Conference
June 26-29, 2011
Anaheim, California

Society for Developmental and Behavioral Pediatrics
September 16-19, 2011
San Antonio, Texas

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