what do people have to say about see system projects?
"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 dat a 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 exceptional."
-Stephen N. Calculator, PhD., CCC-SLP, Professor of Communication Disorders, University of New Hampshire on The Angelman Project
"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 on The Angelman Project
"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., PhD., Pediatric Neurologist on The Angelman Project
"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 on The Angelman Project
"The development of a multimedia approach in all areas of treatment for children with Angelman syndrome will be worth 'a thousand words' for all professionals and families. The Angelman Project is an exciting and ‘cutting edge' project."
-Susan Ferguson, Senior Associate, The Institute for Educational Leadership, Inc. on The Angelman 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 on The Angelman Project
"The 'picture' of Angelman syndrome is not a static picture of typical physical features, but is instead a dynamic picture of movements, behavior, and transient facial expressions. This picture is very difficult to transmit through standard media such as textbooks and journal articles; the video format that the project will use is perfectly suited to conveying this complex picture. I think that the project will help many children and families by facilitating earlier diagnosis and better treatment for Angelman syndrome."
-Joseph Wagstaff, M.D, Phd., Assistant Professor of Pediatrics, Harvard Medical School on The Angelman Project
"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 on The Angelman Project
"I want to say a great big thank you to you and your staff for the wonderful work you are doing on The Angelman Projet. The video that you made of Kasey, comparing her over the past year, has allowed me to show doctors who do not know Kasey, how independently she could walk, eat, etc. And how that has deteriorated over the past year... If I did not have your help I would still be trying to convince people of these things."
-Lori O'Leary, Mother of Kasey, a child with Angelman syndrome
“Just based on preliminary data…we see that the iM-CHAT has been a valuable addition to our autism screening and surveillance routine. The engaging videos, that are part of the iM-CHAT, highlight typically developing children and children at risk, and our physicians have commented that the videos increase the parents’ understanding of the questions. The fact that the iM-CHAT is digital, interactive and automatically scored has certainly streamlined the process.”
-Victoria A. Levin, MD, Pediatric Associates, DE on the iM-CHAT and Well Child Lens
“My son Alexander is 28 months old and we have continually been concerned with early warning signs for autism. The Well Child Lens website helped me understand what I should be looking for and advice on where to go from here. I especially found great use from the ‘See the Signs’ portion of the website because it was easy to navigate. I simply clicked on ‘24 months’ and was directed to a video library of milestones that children around my son’s age have mastered.”
-Tracy on Well Child Lens
