FROM FDA: HEALTH ALERT ON TAMIFLU DOSING for H1N1 swine flu: The Food and Drug Administration (FDA) has issued a health alert to pharmacists and pediatricians about potential dosing errors with liquid Tamiflu for children. The warning follows reports that the dosing instructions don't match the measurement markings on the syringe/dosing dispenser that come with the liquid medication. There was concern that parents could give the wrong dose of the medication of their children as a treatment for the H1N1 swine flu. Health care providers are encouraged to write down the dosage of the medication in milligrams if the syringe/dosing dispenser. Pharmacists are asked to ensure that the units of measure on the prescription instructions match the dosing device provided with the drug. A copy of the alert is available online at http://www.fda.gov/Drugs/DrugSafety/InformationbyDrugClass/ucm183649.htm.
Help Move Research Forward - Participate in a Research Study
NUCDF President Tresa Warner talks about her family's participation in the Longitudinal Study of Urea Cycle Disorders, and thanks the National Institutes of Health for its support of the Urea Cycle Disorders Consortium
We can make a difference and help end the devastating effects of urea cycle disorders.
Please support NUCDF and participate in UCD research!
Baby Steps - Learn the Signs, Act Early:
Helps parents measure their children's developmental progress by monitoring how they play, learn, speak and act. Early recognition of developmental disabilities is critical for obtaining early intervention for children with urea cycle disorders.
Put Your Hands Together: Learn how to help stop the spread of colds and flu and stay healthy.
Plate Full of Color: Teaches kids the value of eating a variety of colorful and healthy foods.
NUCDF Announces 2010 Fellowship Grant
The purpose of the NUCDF's Fellowship Grant is to improve the quality of care for UCD-affected individuals by attracting promising new clinicians and researchers with interest in biochemical genetics to the field of urea cycle disorders. The Fellowship helps support postdoctoral fellows specialize and focus on research, clinical treatment and coordination of multidisciplinary care of UCDs, while advancing the understanding and treatment of our disorders.
Date of RFA: January 29, 2010; Letters of Intent: April 15, 2010; Final Submission: May 25, 2010
ARCHIVED for access! Interactive CME seminars Behavioral Disorders, sponsored by Exceptional Parent
Autism Program Part I: The Early Warning Signs, Diagnosis, Intervention, Treatment and Management of Autism Spectrum Disorders in Infants, Children, and Young Adults. Click Here for More Information
Autism Program Part II: Psychosocial Issues That Impact on the Overall Management of Autism Spectrum Disorders in Children and Young Adults. Click Here for More Information
Baby Mitchell has argininosuccinic aciduria (ASA) detected by newborn screening, saving him from potentially devastating hyperammonemia crisis. His family is active in supporting NUCDF's mission, raising awareness of UCDs and spreading the word that newborn screening saves lives.
NCAA assistant basketball coach, Jeff Strohm, left his promising career after two of his daughters were diagnosed with a urea cycle disorder, argininosuccinic aciduria (ASA). The journey began when ASA was detected in one of his twin girls on newborn screening. After learning about the symptoms of ASA, the Strohms realized their 5-year-old daughter had been showing signs, and she was then also diagnosed with ASA. The Strohm's are committed to helping NUCDF raise awareness and support research. Now with Triple Crown Sports, Jeff has organized an NCAA tournament in November, "Cancun Challenge," which is helping raise awareness of urea cycle disorders.
The Wall Street Journal: Addressing the Fallout of Newborn Screening
Government and Researchers Seek to Reduce False Positives, Improve Physician Education and Follow-Up for Families: The recent adoption of widespread screening of newborns for congenital health problems is saving thousands of lives every year, identifying potentially deadly conditions in time to begin treatment... Click Here for More Information
Mark Batshaw, M.D., Principle Investigator for the Urea Cycle Disorders Consortium and member of the NUCDF Medical Advisory Board, was interviewed by Good Morning America for a segment that aired May 7, 2006. The segment profiled the Rare Diseases Clinical Research Centers, sponsored by the National Institutes of Health. The segment focused on our Urea Cycle Disorders Consortium as an example of this pioneering NIH project.
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A new line of handmade bath soaps has been created especially for NUCDF by a UCD mom. Each bar is hand-engraved with NUCDF and comes with a special tag that can be personalized. All proceeds benefit NUCDF. TO LEARN MORE & ORDER
"BAGS FOR MITCH"
