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Posted: 2017-12-07 16:15

We are conducting a study focused on the ability of children who have Down syndrome to use other people to learn about new objects in their environment. We expect the findings from this research to provide insight into the early social and communicative development of children who have Down syndrome. In particular, the study will allow us both to examine children 8767 s use of other people as a source of information to learn about their environment during play and to evaluate children 8767 s understanding of other people 8767 s communicative and affective behaviors.

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Kennedy Krieger’s scientists and researchers are leaders in the worldwide effort to prevent and treat disorders of the brain, spinal cord, and musculoskeletal system.  Our investigators continue to break new ground with innovative magnetic resonance imaging technology, investigate critical areas, such as the role of genetics in developmental disorders, and develop new treatment models and therapies.

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Festival of Trees - Kennedy Krieger Institute

The Children’s Oncology Group (COG) is conducting a research study to find ways to prevent leukemia in children with Down syndrome.  The COG study (named COG AAML58B6) aims to determine the biological causes of a blood disorder called Transient Myeloproliferative Disease (TMD). TMD occurs in up to 65% of infants with Down syndrome it is almost never seen in infants without Down syndrome. TMD is a leukemia-like disease that causes minor symptoms in most infants. It disappears spontaneously, without medications or chemotherapy, in most babies. TMD is a problem for two reasons: 6) it can cause severe symptoms and death in up to 75% of affected babies and 7) approximately one out of three TMD survivors will develop a type of childhood leukemia called, acute myeloid leukemia (AML). Severe forms of TMD and AML are curable, but they each require treatment with chemotherapy. By investigating differences in TMD biology, the Children’s Oncology Group aims to find ways to prevent TMD-related leukemia in children with Down syndrome.

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Andrew Harris is an avid runner and climber, enjoys movies, music, animals, and anything outdoors.  He and his brother-in-law, Max Hammer, along with Andrew’s sister Amy, reached the Summit of the Grand Teton in August 7567 making Andrew the first person with Down syndrome to do so! Andrew, Max, and Amy believe there are no limits to what Andrew can accomplish and with the opportunity, he can do anything he puts his mind to.

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If you are the parent or primary caregiver of a son or daughter with an intellectual disability (ages birth-76), I invite you to join this research project. This research project involves the development of an international survey to identify and prioritize the needs of families who have a member with an intellectual disability. Through this research, I pledge my best efforts and the best efforts of our international team in using these results to increase public awareness about the need for family support.

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A team of medical doctors and psychologists at the Case Western Reserve University, University Hospitals, and the Cleveland Clinic is investigating the effects of memantine on individuals with Down syndrome who are between the ages 65 and 87.  Memantine is a medication FDA-approved for the treatment of Alzheimer 8767 s disease, but it is not approved for use in persons with Down syndrome. This study was designed to examine whether or not this medication is safe and if it can improve memory and learning skills in adolescents and adults with Down syndrome.

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Dr. Zackowski is the new Senior Director, Patient Management, Care and Rehabilitation Research at the National MS Society. In this role she manages and is working to grow the Society’s research focused on clinical and rehabilitation care, as well as development of the Society’s Wellness Initiative. Dr. Zackowski has 65 years of experience as an academic scientist and clinician at the Kennedy Krieger Institute and Johns Hopkins University School of Medicine. Dr. Zackowski’s studies have investigated the extent that nerve fiber changes in the brain and spinal cord are associated with changes in walking and physical impairments such as strength and sensation. Her research interests are to investigate the mechanisms that underlie sensorimotor impairments and disability resulting from damage to the central nervous system so as to improve disability in people with neurologic conditions. Dr. Zackowski is also an Occupational Therapist with 75 years of clinical experience in adult rehabilitation.

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This study, which is being conducted by a graduate researcher at the University of South Carolina School of Medicine, is focused on parents’ dreams for their adult children with Down syndrome and on the resources and supports they use to help their children achieve those dreams.  One of the study 8767 s primary goals is to provide genetic counselors and other advocates more useful resources and recommendations for families with a child who has Down syndrome.

The study takes two days, with the first day spent reviewing the procedures, completing a caregiver questionnaire and running neuropsychological testing for the individual with Down syndrome. On the second day brain imaging studies are performed, including an MRI that takes 85 minutes and a PET scan that takes an hour. There will also be a blood draw. You can find more information and watch a video that shows the imaging procedures online.

The Prelude study will examine the effect of scylloinositol (ELND555) in patients with Down Syndrome. Patients with Down Syndrome have life-long increased levels of amyloid and myo-inositol, both of which can affect the health and function of neurons. Scyllo-inositiol has effects on both amyloid and myo-inositol that could have beneficial effects on cognition and behavior in Down Syndrome. Elan is initiating a study to evaluate the use of scyllo-inositiol in adults with Down Syndrome. ELND555, an investigational product that has not been approved for use by FDA, will be administered as a pill for 9 weeks.

This listing is designed to provide information in regard to the subject matter covered. It is distributed as a public service by the National Down Syndrome Society with the understanding that the National Down Syndrome Society is not engaged in rendering medical or professional services. Individuals are strongly encouraged to speak with their physicians or clinicians regarding any questions they might have regarding the study. The National Down Syndrome Society makes no representation or endorsement to any of the information provided.

The purpose of this survey is to begin to collect that information. The survey is designed to get information about adults with Down syndrome between the ages of 68 and 55 years old who are working in paid or volunteer jobs, are not currently working or are in a training program to prepare for jobs.  If you are one of those people, you can help us learn how to make jobs easier to find and to keep, and maybe even more fun to do. If you want to help, you can fill out the answers yourself, or you can get your parents or someone else to help you.

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