Kennedy Krieger Donor Impact Report 2014

DONOR IMPACT REPORT

New Moser Center for Leukodystrophies Launched The new Moser Center for Leukodystrophies at Kennedy Krieger Institute will focus on research aimed at preventing, treating, and curing leukodystrophies—a group of rare genetic diseases involving the white matter of the brain and spinal cord, and provide comprehensive care for individuals with these diseases. The center was named in honor of Dr. Hugo W. Moser, the late Kennedy Krieger researcher who pioneered the study of leukodystrophies.

“ We want families to

know that just because there is no cure doesn’t mean there is no care.

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Following Dr. Moser’s model of compassionate and collaborative care, the new center’s team of specialists includes neurologists, physical therapists, social workers, physical medicine and rehabilitation physicians, urologists, and endocrinologists. The center also offers an individualized medicine approach using advanced genomic techniques. Our experts work collaboratively with other leukodystrophy centers across the country and around the world.

This center offers new hope for patients with these debilitating diseases.

- Dr. Ali Fatemi, Director of the Moser Center for Leukodystrophies at Kennedy Krieger Institute

Researchers Pinpoint the Genetic Cause of SturgeWeber Syndrome and Port-wine Stain Birthmarks In findings published in the New England Journal of Medicine, researchers from Kennedy Krieger Institute reveal the discovery of the cause—a genetic mutation that occurs before birth—of Sturge-Weber syndrome (SWS) and port-wine stain birthmarks. SWS is a rare disorder affecting approximately one in 20,000 births, while port-wine birthmarks are more common, affecting approximately one million individuals in the United States.

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This is a complete game changer for those with Sturge-Weber syndrome and the millions born with port-wine birthmarks. Now that we know the underlying genetic mutation responsible for both conditions, we’re hopeful that we can move quickly towards targeted therapies, offering families the promise of new treatments for the first time.

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- Dr. Anne Comi, Director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute

This is an exciting development that may lead to new treatments!

First-Of-Its-Kind Special Education Fellowship Launched The Institute launches a first-of-its-kind fellowship for special education leaders, combining the study of neuroscience, behavior, neurodevelopmental disabilities, and learning. Former Maryland superintendent Dr. Nancy Grasmick joins Kennedy Krieger as the director of the Center for Innovation and Leadership in Special Education.

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Kennedy Krieger’s researchers and medical experts have made advances in neuroscience and brain imaging that offer us a greater understanding of memory, executive functions, language development, motor skills, and brain-behavior relationships than we’ve ever had before. For the first time, this fellowship will give educators the unique opportunity to learn evidence-based approaches in real world settings that will combine special education best practices with research in brain development and behavioral science.

-Dr. Nancy Grasmick, Director of the Center for Innovation and Leadership in Special Education at Kennedy Krieger Institute

This fellowship will train future generations of special education leaders!

Study Finds Nearly Half of Children With Autism Wander Or “Bolt” From Safe Places A study by Kennedy Krieger’s Interactive Autism Network finds that children with autism are four times more likely to wander than their unaffected siblings—a significant problem and a leading cause of death for children with autism.

The study finds that nearly half of children with autism spectrum disorders (ASD) are reported to wander or “bolt,” and more than half of these children go missing. Led by researchers from the Interactive Autism Network (IAN), the nation’s largest online autism research initiative and a project of Kennedy Krieger Institute, this study provides the most comprehensive estimate of elopement occurrence in a United States community-based sample of more than 1,200 children with ASD.

Studies like this today may save lives in the future!

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Committed donors like you continue to be the vital resource behind every success at Kennedy Krieger.

Because of your support, Kennedy Krieger has made pivotal medical breakthroughs that will enhance treatment. You’ve enabled us to spread our knowledge to trainees who will go on to help children across the country and around the world. And you’ve made life-changing care and hope available for those who might have nowhere else to turn.

On behalf of everyone at Kennedy Krieger, please accept our sincere gratitude for all you have done and continue to do.

Research Highlights n Researchers find children with autism are nine times more likely to arrive at emergency rooms in times of psychiatric crisis than their peers. n Researchers develop model for successful regeneration of human skeletal muscle in mice, enabling accelerated research in muscular dystrophy. n Innovative collaboration between doctors and engineers leads to low-cost “Cooling Cure” that could help prevent cerebral palsy in developing nations. n Researchers find one third of children with autism also have ADHD.