December 2011

News from the Executive Committee

NCBDDD Year End Review Webinar Archive Now Available Online
Friday, December 16th, Dr. Coleen Boyle and other members of the NCBDDD Leadership Team – Dr. Gloria Krahn, Director, Division of Human Development and Disability, Dr. Cynthia Moore, Director, Division of Birth Defects and Developmental Disabilities, Dr. Althea Grant, Epidemiology and Surveillance Branch Chief, Division of Blood Disorders, Sal Lucido, Acting Associate Director for Policy – reflected upon the year with their NCBDDD Year End Review presentation.  The PowerPoint is now available online and a video archive will be posted by COB 12/19/2011.

News from our Partners

Family Health Forums Offer Health Education to Families Around the World
In 2011, Family Health Forums providing health education to families were piloted by Special Olympics in several locations in the US and Africa. Education topics ranged from overviews of intellectual disability to malaria prevention and promoting social participation. A range of experts from government, universities, and NGOs led sessions.  Results from the initial pilot sessions show that family members want and need access to health information.  Attendance at the pilot family forums was also consistently higher than projected.  This pilot will be expanded to at least 12 programs in 2012, and an educational toolkit on a range of topics is being developed.

Christopher & Dana Reeve Foundation’s Paralysis Resource Center Autonomic Dysreflexia Cards Available
The Christopher & Dana Reeve Foundation’s Paralysis Resource Center has created wallet-sized Autonomic Dysreflexia (AD) cards, available to the public free of charge. These cards have been produced in collaboration with medical personnel at the International Spinal Cord Injury Center at Kennedy Krieger Institute (KKI) to educate and empower individuals living with paralysis, as well as their caregivers and medical professionals. Autonomic Dysreflexia is a sudden increase in blood pressure, resulting from harmful, painful or injurious stimuli applied below neurologic levels in persons with a spinal cord injury (SCI). If left untreated, it can lead to stroke, seizures, or even death.  Available in pediatric and adult versions in print, and also in Spanish online,  the cards allow individuals to fill in their personal health information including medical history and emergency contacts and include a description of AD, common causes, signs and symptoms, as well as suggestions for what to do when one is faced with the symptoms of AD. For first responders, school nurses and physicians, the card provides treatment recommendations.  No other pediatric-focused cards exist.  To order copies please call 1-800-539-7309 or go to to download a copy or fill out an electronic order form.

“Pediatric RSV: A Focus on Risk Assessment and Prophylaxis” Course Offering NAPNAP Contact and Rx Hours on NAPNAP’s PNPSourCE
Respiratory syncytial virus (RSV) is the primary cause of pneumonia and bronchiolitis in young children and the leading cause of lower respiratory tract infections in infants in the United States. In order to make effective clinical decisions, healthcare providers who are involved with the treatment of pediatric patients should be knowledgeable about recent advances in understanding RSV infection and current evidence-based recommendations for infants and children.  This course is free and offers 1.5 NAPNAP contact hours with 0.5 Rx hours.  For more information, visit PNPSourCE at today!

Another Strong Year for DBA and Bone Marrow Failure Issues at the 2011 American Society of Hematology Conference
The areas of Diamond Blackfan Anemia and Bone Marrow Failure issues were strongly represented again this year at the 53rd Annual Meeting for the American Society of Hematology in San Diego, including this year’s Presidential Symposium on Bone Marrow Failure Syndromes which focused on Diamond Blackfan Anemia and other ribosomopathies.  Notably Ms. Marie Arturi, Executive Director of the Daniella Maria Arturi Foundation for DBA also received the 2011 ASH Outstanding Service Award recognizing her individual efforts over more than a decade to raise public awareness and increase research and clinical care initiatives for DBA.  Additional DBA and Bone Marrow Failure sessions included, the “Ad Hoc Scientific Committee on Bone Marrow Failure p53,  Ribosome, and Diamond-Blackfan Anemia”, “Iron and Heme Sensing in Red Cells and Anemia”, “Understanding and Management of Inherited Bone Marrow Failure Syndromes” and other sessions throughout the Conference. Full ASH Press Release.

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