GeneticaLens-The Angelman Project - Contact Information
 
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Louise Tiranoff Productions, Inc.
GeneticaLens
488 14th Street
Brooklyn, New York 11215-5702
(718) 788-6403 telephone
(718) 369-2387 fax
Louise Tiranoff

Louise Tiranoff Productions (LTP) is an independent documentary and multi-media production company, specializing in media to enhance the healthcare and education of people with rare disorders. LTP has developed "GeneticaLens." The company has its own IRB (Internal Review Board) directed by Dr. Gregory Pastores at New York University's Rusk Institute. Ms. Tiranoff, President of the company, and Principal Investigator for The Angelman Project, has previously directed documentary television specials and series, including "A Woman Is…" (WRC/NBC-TV in Washington, D.C.) and "Investigative Reports: Execution at Midnight" for A & E.

The Angelman Project has been used for lectures and presentations on a limited basis since 1999, when it was featured at the Scientific Symposium of the Angelman Foundation National Conference in Cherry Hill, New Jersey. A poster presentation was given at the First International Conference on Angelman syndrome in Brussels, Belgium in 1999.

Dr. Joseph Wagstaff and July Hyman presented The Angelman Project to the First World Conference of the International Angelman Syndrome Organisation (IASO) in Tampere, Finland, July 4-8, 2000.

In May of 2001, a two-hour presentation was given at Hackensack University Medical Center and Children's Hospital CME Confedrence in Hilton Head, New Jersey, by Dr. Randye Huron, Director of HUMC's Institute for Child Development. The Angelman Project has also been used for Grand Rounds at the hospital by Dr. Huron in order to teach her staff about AS.

Other recent presentations include that of sibling expert Julie Hyman, who presented our videos on siblings to The Angelman Syndrome Foundation's National Conference in Chicago, in July 2001.

In September of 2002, presentations are planned at the 2nd ASSERT National Conference to be held at Loughborough University, in the UK.

LTP is currently working with Dr. Cate McClain and Pat Osbourn at the University of New Mexico's Institute for Development and Disability on "Communication Deficits in Autism: A GeneticaLens Database", a video database of observable communicative behaviors in children with ASD and age matched children with typical development, Down Syndrome, Angelman Syndrome and other communication disorders.

A Pilot Study Initiated To Create the Groundwork for an Angelman profile within the Autism assessment using "GeneticaLens"
is being developed in collaboration with Dr. Jeremy Silverman and Dr. Christopher Smith at Mt. Sinai School of Medicine in New York City, who will use this tool to facilitate their research into the genetic causes of Autism.

Other projects in development include a project to develop a database on Morquio and MPS disorders, and a project to develop a CD on early signs and symptoms of Rett syndrome.

The Fearless Theater Company
The Fearless Theater Company is a non-profit theater and media company for children with and without disabilities. Projects include "Scenes From Our Lives," wheelchair mobile students who campaign to be a part of all activities - including dances and cheerleading. PSA's (Public Service Announcements) by Fearless members have been broadcast by WNYC in New York City. Fearless Theater is housed at Louise Tiranoff Productions, and is currently developing a website soon to be complete and linked to this site.

A Film About 9/11
Fearless Theater recently collaborated with The Educational Alliance, The After School Corporation and The New York Times 9/11 Neediest Fund to create a film for young people about their experiences during this time. Anita Weber, cinematographer/editor for the Angelman Project filmed and edited "The History Makers" about students at two high schools near Ground Zero in New York City. The film, directed by Lynne McVeigh, was made at Louise Tiranoff Productions, located in Brooklyn, NY. Many people in our area lost friends and family as a result of the World Trade Center collapse and there were many memorials and tributes in our area for months following September 11th. We were honored to be a part of this effort.

PRINCIPAL INVESTIGATOR
Louise Tiranoff

Jill Hendrickson, M.S., (NIH Phase 1) M.S.S.W., Genetic Counselor Women's and Infants' Services / Maternal Fetal Medicine, University Medical Center, Jacksonville, FL

NIH Grants (Phase 1 & 2)

PRINCIPAL INVESTIGATORS
Jill Clayton-Smith, Consultant Clinical Geneticist University Department of Medical Genetics and Regional Genetic Service, Central Manchester Healthcare Trust, Manchester, U.K & Louise Tiranoff For research in the UK sponsored by The Angelman Syndrome Foundation, USA (1) History & Discovery: Dr. Harry Angelman's Observations, (2) Special Issues of Adolescence and The Transition to Adulthood

COLLABORATING INVESTIGATORS
Jill Clayton-Smith, M.D..(see above) Susan C. Ferguson, M.Ed. Information Specialist, Outreach Coordinator National Information Center for Children and Youth with Disabilities (NICHCY) Timothy J. Freeman, Ph.D. Child Clinical Psychologist, Behavior Analyst Jill E. Hendrickson (see above) H. Terry Hutchison, M.D., Ph.D. Medical Director, Department of Rehabilitation Services & Department of Neurology Valley Children's Hospital, Fresno, CA Associate Clinical Professor, University of California San Francisco
Joseph Wagstaff, M.D., Ph.D. Department of Pediatrics and Deparment of Biochemistry & Molecular Genetics University of Virginia School Of Medicine, Charlottesville, VA Charles Williams, M.D. Associate Professor and Chief, University of Florida, College of Medicine, Division of Genetics

CONTRIBUTORS
Bernard Dan, M.D., Locum Head Department of Pediatric Neurology, University of Brussels Stephen N. Calculator, Ph.D. Professor and Chair Dept. of Communication Disorders University of New Hampshire Cathy I. Filtz, M.S., Pediatric Physical Therapist Maryland Infant and Toddlers, Prince George's County Public Schools

Steven Alan Katz, M.D., Director, Chairman Emergency Dept. St. Francis Medical Center, Trenton, NJ Instructor in Surgery (Emergency Medicine), Jefferson Medical College, Philadelphia, PA Theresa Rebhorn. B.S.W. Senior Writer / Editor National Information Center for Children and Youth with Disabilities (NICHCY) Leigh Sutherland, Director NBC/WRC-TV Channel 4 Washington D.C., Meet the Press W. Christopher Taylor, D.D.S. Specialist in Orthodontics Charleston, WV Elaine Whidden, M.S.N. Nurse Practitioner Gainesville, FL

THE STAFF
Louise Tiranoff / Producer Videographer Principal Investigator
Catherine Calvert / Associate Producer
Anita Weber / Videographer Editor
Michael Tiranoff / Editor
Kerrie Welsh / Associate Producer
Roy Marasigan / Location Sound Recording
Lance Tukell / Editor
Carla Ruff Sound Engineer / Editor
Katrina Markel Researcher / Associate Producer
Lisa Kelly Design / Web Design and Programming
Marilyn Bloom / Accounting
Anne Molinas /Financial Manager
Phyllis Superville /Accountant

THE SUBJECTS
A special thanks to all 72 subjects and their families who have participated in The Angelman Project to date.

"Anita"

"Carla"

"Louise"

"Sound Engineer"

Louise Shooting Dr. Williams"

© Copyright 2003 GeneticaLens