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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
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Additional Feedback
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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