February 2011

News from the Friends of NCBDDD

NCBDDD Conference Calls on President’s Budget for FY2012: Recordings Now Available

NCBDDD held three conference calls on Tuesday, February 15 from 11:00am-12:30pm regarding the recently released FY2012 President’s budget request. During this call Center staff reviewed the proposed structural and funding adjustments contained in the President’s budget request as it relates to NCBDDD. The Division on Blood Disorders, Division on Birth Defects and Developmental Disabilities, and Division on Human Development and Disability recordings are now available below. For any follow-up questions and partner input, NCBDDD has established the following mailbox: NCBDDDStrategicPPI@cdc.gov. Please direct any questions and/or suggestions to this mailbox.

mp3_icon Division of Blood Disorders

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mp3_icon Division of Birth Defects and Developmental Disabilities

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mp3_icon Division of Human Development and Disability

 

Friends of NCBDDD Unveils New Website

www.friendsofncbddd.org
Membership information, events, resources, and monthly newsletters will be posted at this newly improved hub for all activities related to the Friends of NCBDDD.  We invite you to have a look and let us know what you think.

Friends of NCBDDD Advocacy Coalition Meets with NCBDDD Officials

On January 27, the Friends of NCBDDD Advocacy Coalition conducted its first face-to-face planning meeting, despite dealing with the night before snow. 18 folks physically attended the January 27 meeting and 5 folks participated in the meeting by telephone. A briefing on the current NCBDDD strategic planning was provided by Acting Director Dr. Coleen Boyle and Deputy Director Alison Johnson. The NCBDDD strategic plan contains three core platforms – Assuring Child Health, Protecting the Health of People with Blood Disorders, and Improving the Health of People with Disabilities.  After NCBDDD officials left the meeting, the group brainstormed ideas that we significantly alter our past appropriations messages by focusing on social impact metrics and statements concerning what do these programs directly mean to persons at risk of or living with the disabilities and illnesses served by NCBDDD.  We are closely coordinating our work with the Coalition for Health Funding (CHF).  CHF has developed talking points on “making the care for public health investment,” with the primary slogan being “Cuts to health funding do more harm than good.” See www.aamc.org/advocacy/healthfunding for details.  Please volunteer to work through the advocacy coalition by contacting Clarke Ross at clarkeross10@comcast.net.

News from NCBDDD

Healthy Beginnings Briefing Launches NCBDDD 10 Years of Service Anniversary

The March of Dimes and Spina Bifida Association are sponsoring a congressional briefing titled “Healthy Beginnings” in Room B-339 of the Rayburn House Office Building on Thursday, March 3 from 9:30 a.m. to 11:00 a.m. (breakfast will start at 9 a.m.).  The Healthy Beginnings Briefing launches the National Center on Birth Defects and Developmental Disabilities (NCBDDD) 10 Years of Service anniversary by bringing awareness to the improved health outcomes among children through screening, early diagnosis, and intervention.  Judy Woodruff, news anchor and advocate of birth defects prevention research, is scheduled to share her story as a parent. Dr. Coleen Boyle, NCBDDD Acting Director, will provide an overview of the Center’s accomplishments from the past 10 years and frame the Center’s direction over the upcoming years.  Dr. Martha Werler, a professor of epidemiology at Boston University’s School of Public Health and senior epidemiologist at the Slone Epidemiology Center, and Dr. Beth S. Benedict, a professor in the Department of Communication Studies at Gallaudet University, will each highlight the promise of birth defects prevention, achieved successes, and future opportunities. March of Dimes President Dr. Jennifer Howse will serve as moderator and offer perspective on the importance of sustaining the NCBDDD.  The briefing will kick-off a series of events this year that will take place around the country to highlight the NCBDDD’s accomplishments over the past decade and celebrate its 10-year anniversary. Please visit the 10 Years of Service Website at http://www.cdc.gov/ncbddd/tenyears/ for more information about Healthy Beginnings and other 10th anniversary activities planned throughout 2011.

NCBDDD Strategic Plan Now Available

NCBDDD’s Strategic Plan 2011-2015 is now available on their website and can be found at http://www.cdc.gov/ncbddd/AboutUs/priorities.html. The Center also has updated the “About Us” section to reflect their new strategic priorities and provided additional resources for partners, including a map of NCBDDD state activities, updated biographies of NCBDDD leadership, and information related to NCBDDD’s 10 Years of Service activities. NCBDDD encourages partners to explore these new resources and hopes they find them helpful in explaining the Center’s work and future direction.

News from our Partners

Amputee Coalition: Revitalized Brand, New Logo, New Name, and New Open Community Model

The Amputee Coalition launched its 25th Anniversary celebration with a new logo, proactive brand principles and a new open community model that replaces the former dues membership model. These changes are effective immediately.  “The Amputee Coalition is 25 years young this year, and we are excited to be able to start this milestone year with these transformational changes,” said Kendra Calhoun, Amputee Coalition President & CEO. “We are anticipating a great 2011 and look forward to continuing to rollout new, energizing activities and programs all year.”  The Amputee Coalition is planning three key initiatives to celebrate its 25th Anniversary and the introduction of several new programs this year, according to Calhoun. “We are confident our friends, constituents and partners will be pleased with our more proactive measures to reach more amputees sooner and to undertake greater outreach for limb loss prevention,” said Calhoun.  The Amputee Coalition of American is now doing business as the Amputee Coalition. The organization will not use the initials “ACA” or “AC.” The reasoning is to increase name recognition by the use of the full name and to decrease confusion that acronyms often cause.  According to Calhoun, the new logo has graphic elements specifically designed to represent the organization. For instance, the sun image reflects the organization’s goals to reach out to people who are at risk for or affected by limb loss. The dots represent the many people served and the swirl represents forward momentum. This was the organization’s first comprehensive brand analysis in its 25-year history, and several months of analysis and planning went into it.

Exceptional Parent Digital Journal Now Available to AAHD Colleagues and Members

AAHD is pleased to announce that due to a recent collaboration with EP Global Communications, AAHD is able to offer a one year complimentary on-line subscription to Exceptional Parent Digital Journal (EP) to AAHD colleagues and members.  EP Digital is the former Exceptional Parent Magazine, and part of EP Global Communications, a forty year old award-winning publishing and communications company www.eparent.com.  EP provides resources and educational information for families of children and adults with disabilities as well as to physicians, allied health care professionals and educators.  This free on-line subscription will also include the annual 2011 EP Digital Resource Guide.  If you are interested in receiving a free one year subscription to Exceptional Parent on line, please send an email to contact@aahd.us and place in the subject line: EP

Grants Available for Tuberous Sclerosis Complex Drug Screening Program

More Information
The goal of this program is to support pre-clinical development and testing of new therapies for TSC.  This grant cycle, the program will facilitate solicitation, development, and review of therapy-directed projects to accelerate the translation of basic research discoveries into therapeutic candidates for clinical testing in individuals with neurological and neurocognitive symptoms associated with TSC with up to $220,000 to be awarded. In addition to these specific grants, there will be additional funds up to $75,000 that are not necessarily specific to neurological and neurocognitive symptoms associated with TSC.  The TS Alliance is looking to fund research for the steps between compound identification and testing for efficacy in human clinical trials. Since there are many steps along the drug pipeline, the TS Alliance will consider proposals that address any of the following points in the development of a new compound (or a repurposed compound or drug) as a potential therapeutic for individuals with neurocognitive symptoms associated with TSC.  The TS Alliance will facilitate matching researchers who have a compound or compounds they would like to test with researchers who have TSC assay systems and/or animal models as needed.  This program is not intended to fund basic research, the development and characterization of new assay systems or animal models, or any clinical trials utilizing human subjects.

Pediatric Hypnosis: A New Realm of Pediatric Health Care

The National Association of Pediatric Nurse Practitioners (NAPNAP) is offering a Pediatric Hypnosis Course in conjunction with their annual conference in Baltimore.  This 20 credit course runs from March 25 – 27, 2011.  This course is appropriate for all pediatric health care providing, including child life specialists, social workers, counselors and others.  Add a new dimension to  the care you provide!  This workshop meets the standard training guidelines of the American Society of clinical Hypnosis Standards and is approved for 20 hours of credit.  For information, visit NAPNAP’s website at www.napnap.org or call Dolores Jones at 904-646-4288.  

Partner Conferences

3rd National Summit on Preconception Health and Health Care

June 12-14, 2011
Tampa/St. Petersburg, Florida
More Information 

Sickle Cell Disease World Day

June 23-24, 2011
Atlanta, Georgia
A detailed agenda and information for attending the event are forthcoming.  If you would like your name to be added to our mailing list, please send your contact information to sdworldday@cdc.gov.

National Marfan Foundation Annual Conference

July 14-17, 2011
Portland, Oregon

More Information

CHADD 23rd Annual International Conference on ADHD

November 10-12, 2011
Orlando, Florida
More Information

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