July 2012

In this Issue

A Note from the Chair of NCBDDD

Parent Corner – New!

News from NCBDDD:
Congressional Changes
to CDC Appropriations – FY2012

News from our Partners
Transforming Duchenne Care Meeting is Highlight of PPMD’s
Annual CONNECT Conference

Congenital Heart Defect Fact
Sheets Now Available

Funding Opportunities

PPHF 2012: Community
Transformation Grants-Small Communities Programs
financed solely by 2012
Prevention and Public
Health Funds

*Deadline: July 31, 2012

AAHD Scholarship Program
*Deadline: November 15, 2012

Upcoming Conferences

National Forum
on Disability Issues

September 28, 2012
Columbus, OH

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

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

AMCHP Annual Conference
February 9-12, 2013
Washington, DC
*Proposal Deadline:
August 24, 2012

Upcoming Webinars

Time Out for Genetics:
Myths of Primary Care Providers
and Patients/Families
Regarding Genetics – Setting
the Record Straight
July 26, 12:00-12:30 pm CT
Now Archived!

Upcoming Course

Deformational Plagiocephaly
Register on PNPSourCE
to earn 1 contact hour!

July is  National Cleft & Craniofacial Awareness & Prevention Month.
Learn more by accessing the new
JPHC article, Evidence-Based Care
of the Child with Deformational Plagiocephaly.

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 August 10, 2012. Photos and web links are encouraged!



Join the Friends of
NCBDDD Listserv

Greetings from the Chair of NCBDDD

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

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

Dear Friends and Colleagues,

I hope that you are all taking some time to enjoy the warm and sunny days of summer! Throughout the summer months, the Friends of NCBDDD Executive Committee has been meeting regularly to plan for fall activities. One of the major responsibilities for the Friends of NCBDDD Executive Committee is to develop a transparent process and policy for the upcoming Executive Committee elections.

There will be three seats available on the Friends of NCBDDD Executive Committee for 2013: Chair, Membership and Communications Chair, and Member at Large.  Any member of the Friends of NCBDDD is eligible to hold a seat on the Executive Committee.

The Nominations Committee will disseminate to all of the Friends, by September 3, 2012, a nomination form which will allow each organization to nominate a person from their organization for an available position. The nominations form will need to be submitted by October 15, 2012. The candidates will be interviewed by the Election Sub-Committee and the full Friends of NCBDDD Executive Committee. The elections will be held in November, 2012 and an announcement of the newly elected Executive Committee members will be in late November or early December.

We encourage all of you to nominate an individual to serve on the Executive Committee. The Executive Committee meets monthly via teleconference and its members represent the three NCBDDD divisions. If you have any questions please contact Adriane Griffen, Membership Chair, at agriffen@aucd.org or Roberta Carlin, Friends Chair, at rcarlin@aahd.us.

The Executive Committee has also been busy meeting with NCBDDD Leadership to develop a coordinated and strategic communication plan that may include quarterly calls with the entire membership, a webinar series, an annual year end meeting, and two NCBDDD planning meetings with each division and their partners each year. Both NCBDDD Leadership and the Friends of NCBDD Executive Committee are excited to be able to offer these opportunities for engagement and communication to all of our partners. Please check the Friends of NCBDDD website for updates.

Thanks again for your support of NCBDDD, and keep an eye out for those nomination forms which will be coming through email in early September.

Enjoy the rest of the summer!

Best regards,

Roberta Carlin, MS, JD
Friends of NCBDDD Chair
301-545-6140, ext. 206

Parent Corner

Welcome to the newest addition to the Friends of NCBDDD newsletter! I work as a consultant for the Center, hoping to expand our “friends” group to other family groups. And for many years I have worked to create a self-advocacy organization designed expressly for children with disabilities. At age 10, my daughter Katie, joined me as an outspoken advocate for disability rights, testifying before Congress, personally visiting Senators and Representatives, and training others to advocate for themselves. We did many public speaking events before her passing in May of this year. Since May, I have heard from many individuals we had worked with over the years. They spoke to the legacy that Katie’s life leaves. What I find most important is that her life led to so many new ideas and philosophical changes in promoting health in persons with disabilities.  I think of the things we have accomplished in supporting home and community based living for persons with disabilities, and we still have a long way to go. Passage of the ACA is a step towards the partnership that has designed the concept of family and professional collaboration and family/patient centered care. As we move into this new era, we must keep this commitment alive and well. We, as colleagues, can join forces to improve the lives of all persons with disabilities and special health care needs and their families. Whether the person is young, old, or in between, we can work together to improve our world and make it a better place for all.

NCBDDD is striving to reach out, to listen, to study, to respond to the importance of public health care delivery. We believe we can be a partner in moving our “health system” forward. Our primary work revolves around surveillance (i.e., data to action), epidemiologic research, and prevention; we will be reaching out to all of you to identify the right questions to ask and the right thoughts that can raise awareness about our population. We want to assure a true partnership with families and professionals.

We are looking for the opportunity to expand our knowledge and raise awareness of the significance of parent involvement and professional collaboration. Let us use the “parent corner” to launch a dialogue in support of lifespan initiatives that can improve the lives of all community members. We can do this!

Julie Beckett

News from NCBDDD: Congressional Changes to CDC Appropriations – FY2012

The passage of Public Law 112-74 – FY2012 Omnibus Appropriations Act, ushered in a new era of budget planning and execution for CDC. Prior to FY2012, CDC appropriations were transferred to the Agency from the Department of Treasury utilizing a single treasury account. While Congressional report language directed how these funds were to be expended, CDC could managed these funds with relative flexibility and reallocate funds as needed provided advanced notice of such a reallocation was given to Congress. Modeling the appropriations system used to fund NIH; Congress eliminated CDC’s single treasury account and replaced it with fourteen (14) separate treasury accounts representing each major funding activity at CDC, including a treasury account for Birth Defects, Developmental Disabilities, and Disabilities and Health. In doing so, Congress erected significant firewalls between the various CDC program activities. In particular, the transfer of funds between treasury accounts is now limited to no more than one (1) percent between individual appropriations accounts. Additionally, no single appropriation may be increased by more than three (3) percent as a result of such transfers. Congress’ rationale for the establishment of these accounts was “to improve transparency and accountability” and CDC was directed to “reflect this new structure” in future budget requests. CDC is operating under this system for FY12 and currently working to adapt its internal policies and procedures to accommodate this new appropriations structure.

News from our Partners

Transforming Duchenne Care Meeting is Highlight of PPMD’s Annual CONNECT Conference

Parent Project Muscular Dystrophy (PPMD) held the first ever Transforming Duchenne Care Meeting the day before its Annual Connect Conference in Fort Lauderdale, FL. This meeting built upon the work done by the CDC and the Duchenne community in creating long awaited care considerations for Duchenne Muscular Dystrophy, as well as NCBDDD’s meeting to identify public health priorities in muscular dystrophy. The goal of the Transforming Duchenne Care Meeting was to bring together leadership from top medical institutions, neuromuscular experts, and patient representatives to discuss, in an open forum, the ideal configuration, features, services, and structure of state-of-the-art family centered care for patients with Duchenne muscular dystrophy (Duchenne). The meeting was chaired by Steve Allen, CEO of Nationwide Children’s Hospital in Columbus, Ohio, and Elizabeth McNeil of the National Institutes of Health (NIH). Attending, were 36 providers and hospital administrators representing 17 different hospitals from around the US.  Attendees also included eight parent representatives, as well as representation from PPMD, MDA, CDC, Cystic Fibrosis Foundation, and NIH’s NeuroNext and Industry. Findings from the meeting included dissatisfaction with the current discrepancies in access to care across the country, the impact of care discrepancies for Industry conducting clinical trials, and plans to develop an evaluation tool for clinics providing neuromuscular care.

Congenital Heart Defect Fact Sheets Now Available!

The Congenital Heart Public Health Consortium (CHPHC) is a group of organizations uniting resources and efforts in public health activities with the mission to prevent the occurrence of Congenital Heart Defect (CHD) and to enhance and prolong the lives of those with CHD through surveillance, population-based research, education, health promotion, advocacy, and policy development. A workgroup of the CHPHC has developed two fact sheets after carefully reviewing published literature; they developed these sheets to address frequently asked questions about CHDs. The short version of the fact sheet answers five basic frequently asked questions in an easy-to-read format. The long version addresses a wider range of issues and includes more detailed information with references; it can serve as a source document for sound bites and statistics regarding CHD.

Scholarship & Conference News

AAHD Accepting Applications for Scholarship Program

American Association on Health and Disability (AAHD) is accepting applications for the AAHD Scholarship Program which supports students with disabilities pursuing higher education in a field related to disability and health. Preference is given to students who plan to pursue undergraduate/graduate studies in the field of public health, behavioral health, epidemiology, health promotion, disability studies, to include disability policy and disability research. Scholarships are limited to under $1,000. Scholarships are competitive each year.  Visit the AAHD website at: http://www.aahd.us/initiatives/scholarship-program/ to download an application. The deadline for submission is November 15, 2012. Please circulate this opportunity throughout your networks. For further information, please contact Maria Manolatos, AAHD Scholarship Coordinator, at mmanolatos@aahd.us.

2013 AMCHP Annual Conference: Call for Proposals

The Association of Maternal & Child Health Programs (AMCHP) invites you to submit a session proposal for the 2013 AMCHP Annual Conference (Feb. 9-12). The theme is Advancing the Maternal and Child Health Vision: Leadership, Quality and Action. The conference will be held at the Omni Shoreham Hotel in Washington, DC. The AMCHP Annual Conference is the ideal venue to present your ideas, research, innovative programming, best practices, and effective outreach strategies to MCH and other public health practitioners, directors of state programs, federal officials, advocates, family leaders, researchers and healthcare providers. Click here for complete information about submitting your session proposal and for the online submission system. The deadline for submissions is Friday, Aug. 24, 2012. You will be notified about the outcome of your submission by Monday, Oct. 15, 2012.

For more information about the 2013 AMCHP Annual Conference, click here.

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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