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The Angelman Project
What is Angelman syndrome?
History of the Diagnosis
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Thank you very much for offering me collaboration in your Morquio project. I agree that a comprehensive documentation could be of great help for patients as well as medical doctors and scientists for further progress in knowledge on diagnosis, natural history and treatment of this rare condition."
- Eduard Paschke, MD, Univ.-Klinik für Kinder- und Jugendheilkunde, Graz, Austria.

"Louise Tiranoff and her production staff are well known to me, having served as Chair of the IRB created to oversee the design and implementation of The Angelman Project, among other responsibilities to ensure the protection of the rights of human subjects. … Ms. Tiranoff's efforts will significantly advance both the art and science of the care of these individuals and I enthusiastically support her in these efforts."
- Gregory M. Pastores, Assistant Director, Department of Neurology, New York University School of Medicine

"Through your project you have amassed, in video, an extremely valuable collection of Angelman's syndrome children and their families. As you know, I am eager to work with you to develop an Angelman's syndrome autism profile by studying as many of the Angelman's children who participated in your project as possible."
- Jeremy Silverman, MD, Principal investigator of the family history/genetic projects., Seaver Autism Research Center, Mt. Sinai School of Medicine, New York, NY

"From a physician's point of view, it's very useful to me to just see lots of kids, talk to families, from a variety of situations, and it gives me a much better picture of what Angelman syndrome is like, what I might expect for the next child that I have with Angelman. And from a scientific point of view, I think it brings together scientists who are interested and allows us to fertilize each other's brains with new ideas."
- H. Terry Hutchison, M.D. Ph.D., Interview Sept. 2000. The Following Quotes Are Excerpts from letters of support for NIH National Institutes of Health Proposals, Phase 1 and 2

"This appears to be one of the most ambitious projects of its kind, using technology to disseminate state of the art information regarding individuals with Angelman syndrome... I have been examining communication characteristics of this population for the past three years. I would now like to begin compiling some of these data for dissemination. … I am convinced that my work would have significantly more impact if presented in a multi-media format. The ability to actually see and hear different communication characteristics, assessment and intervention protocols and other sources of information will be exceptionally beneficial to families, professionals, and the scientific community... The potential benefits of this project and implications for future projects, are ex-ceptional."
- Stephen N. Calculator, Ph.D., CCC-SLP, Professor of Communication Disorders,University of New Hampshire.

"This project is well designed and I can see many implications for research that will not only inform us about Angelman Syndrome per se, but will also have implications for children and adults with other developmental disabilities... This project is likely to have implications for developing more effective ways to interact with (Angelman) children and subsequently to enable them to experience a richer quality of life. The prospects for single-subject research in the areas of speech and language, sleep and feeding difficulties, and educational interventions abound."
- Karla J. Doepke, PhD, Assistant Professor & Clinic Director, Auburn University, Licensed Psychologist #682

"Through my experience in the area of developmental medicine and physical therapy, I have been appalled at the lack of information available to families. I have seen families suffer though repeated incidents of poor management of their children with special needs. All this could have been avoided if more information had been available to the primary health care provider and to the families. The effort spent in amassing this information in this readily accessible and user friendly format will have far reaching effects. I am thrilled to be part of this endeavor."
- Cathy I. Filtz, Pediatric Physical Therapist, Pediatric Clinical Specialist.

"The implications for other populations of individuals seem within reach because of this project."
- Timothy J. Freeman, Ph.D., Child Clinical Psychologist/Behavior Analyst,WV Lic. # 555

"I remain in full support of the Angelman Project as an important and exciting vehicle to share comprehensive information about Angelman syndrome and to stimulate additional research..."
- Jill Hendrickson, MS, MSSW, CGC, Genetic Counselor, Perinatal Medicine, Division of Genetics, University Medical Center, University of Florida Urban Campus (pictured right)

"I am excited about the Angelman Syndrome Project. Of course I will be happy to participate on a consulting level."
- H. Terry Hutchison MD PhD, Child Neurology and Rehabilitation, Fresno, California.

"I will be happy to collaborate with you on the genetic aspects of your video on Angelman Syndrome. My laboratory has extensive experience in cytogenetic and molecular genetic analyses on families with chromosome 15 disorders..."
- Joan H.M. Knoll, Ph.D.,Assistant Professor of Pathology, Harvard Medical School.

Additional Feedback

Additional Feedback

Jill Hendrickson
Jill Hendrickson, MS, MSSW, CGC, Genetic Counselor, Perinatal Medicine, Division of Genetics, University Medical Center, University of Florida Urban Campus

awaiting photo of Leslie

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