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Expert Feedback - Additional Feedback

"The video clips you provided were well balanced, showing both sides of the Angelman sibling coin, which helped parents recognize that the feelings expressed by their non-disabled children in relation to their brother or sister with Angelman syndrome were very much normal. With the Angelman project you have created an invaluable resource that will surely continue to benefit individuals with Angelman syndrome, their families and the professionals who work with them."
- Julie Hyman, Sister of individual with Angelman syndrome.

"I want to say a great big thank you to you and your staff for the wonderful work you are doing on The Angelman Project. … The video that you made of Kasey, comparing her over the past year, has allow me to show doctors who do not know Kasey, how independently she could walk, eat, etec. 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 (pictured, right)

"Thanking you for both the work and your insight in putting the whole thing (The Angelman Project) together. Having raised David for 25 years before knowing that he had AS we spent all that time wondering what his problem was and coping with all those issues that I am sure you have dealt with in the project. All the present and future AS families have been done a service by what you guys are doing."
- Fred Windbeck, Father of David (pictured, right)

"Jason and I are part of the Angelman Project and are proud to tell our family's story in the hopes that others will get an early diagnosis that will lead to early intervention and family stability."
- Jane Anthony, Mother of Jason (pictured, right)

"Rare diseases are difficult enough for parents and those affected without adding the complicating issue of no diagnosis. I've seen their [Louise Tiranoff Productions'] sample CD Rom video clips, and they are so very well done by the comparison to different patients as well as with different ages. The videos are professionally done with current medical insightfulness and vision for the future. They took their video know-how and blended it with physicians knowledge and parents unique approaches to coping with daily living. It's an exceptional piece of work that demonstrates their passion and high level of quality in the field of video production. I am honored to be a part … of this project and to give my endorsement."
-Mary Harings, President, The Carol Ann Foundation

"I have seen the results of their [Louise Tiranoff Productions'] documentation of the rare disorder called Angelman's Syndrome and believe this effort should be expanded to do the following:

1. Document other rare disorders in order to shorten diagnosis, focus patient's care to include more appropriate treatments by reducing trial and error, reduce the overall burden of the diseases on patients and their families, and improve quality of life for patients.

2. Conduct research to establish the best model for collecting, editing, storing, and providing access to visual information about rare disorders.

3. Provide the greatest possible number of physicians, families, and researchers with good visual recordings of patients with rare disorders.

4. Do this for the maximum number of rare disorders. Tiranoff's efforts to create a digital record go beyond the production of educational films. Their exploitation of the digital media is focused on generating a Visual Data Model that is sufficiently rigorous to support clinical decision-making and accelerate research."
- Steve Smith, President, Plan Management, Parent of Ian Michael Smith, who has Morquio syndrome.

"I am really excited about this project and the prospect of touching the lives of other siblings, families, and the general public. My younger sister Whitney (who has Angelman Syndrome) and I are attending the same high school....our schoolmates have gained an appreciation for and greater acceptance of individuals with physical and mental challenges. I am confident that this innovative project will accomplish this same goal and have far reaching effects!"
- Ashleigh Evans, Founder of The Halo Club, An International Organization for the Siblings of Children with Angelman Syndrome.

"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.

"As we enter this brave new era of managed health care, who will be able to afford the hundreds of thousands of dollars in costly testing that our insurance company paid in our lengthy search for a diagnosis of our daughter's rare medical condition. If we had access to the type of material that we are now trying to put together we would have saved years of time and an enormous amount of money and our daughter's therapy would have been better directed from the start."
- Leigh Sutherland, Director of Meet the Press, WRC/NBC - TV, Washington, D.C. Mother of a child with Angelman syndrome. (pictured, right)

"The peace of mind, the affinity group contact, the opportunity for further research and the knowledge base about this syndrome are all parts of the reasons why genetic knowledge is so all important. Oh that this project could be enlarged and done for so many other syndromes! By using CDROM and WEB based technology you are combining the best of technology to serve a very human need. From a parent's point of view: being able to responsibly think about family planning either for your own self or your other offspring, the removal of guilt, and getting an answer to the old why question can go a long way towards healing and good medical care. In addition identification and knowing the experts adds to the research capabilities of the medical community and may even lead to breakthroughs on cures or prevention. (From the ASF listserve) I think what has been done with The Angelman Project has tremendous potential for many medical syndromes. What an incredible way to share the knowledge base and educate developmental disability physicians in their own time and space. Once the information is collected the uses are there for whatever discipline needs to tap into this vast database of information."
- Jane Anthony, President of PAIR (Parents and Associates of the Institutionalized Retarded of Virginia), Board member of VOR (Voice of the Retarded). (April, 2001)

"In a conversation that I had with the national director of the CP (Cerebral Palsy) Foundation, he indicated that as many as 25% of the folks who have been diagnosed with CP, in fact have AS. So the number of folks throughout the country who have AS is much, much greater than what we all may have thought at one particular time. But it's a matter of communication, awareness and education, and in education we're finding the medical community in particular is becoming more and more aware of the incidence of AS…. We know from our particular experience with Kate that having a firm diagnosis for the syndrome and the problems that impact your child, makes all the difference in the world in terms of knowing how to deal with something, and it also allows you to relate with something that's very specific, rather than unknown."
- Frank McCullough, former President of the Angelman Syndrome Foundation. (Interview, January, 2000)

"AS has developed particularly over the last 2-3 years I've seen big changes in that more children are being identified, more adults in particular are being identified with the syndrome, which means that there are many people out there with the syndrome who are yet undiagnosed. … In my opinion, it is important that people have a diagnosis because of the implications for the future. It gives you an idea of what you can expect with regard to someone who has the syndrome, and also the similarity in behaviors, and maybe ways of dealing with challenging behavior in the syndrome, as well as with the epileptic seizures, on all the parts that are involved within AS…"
- Sally Walburn, chairperson of Assert, one of the 2 AS support groups in the UK, and a member of the International AS Organization's executive board. (Taken from an interview in October of 2000.)

Fred Windbeck and his son David
Fred Windbeck and his son David

Jane Anthony with her son Jason
Jane Anthony with her son Jason

Alex, daughter of Leigh Sutherland
Alex, daughter of Leigh Sutherland

Kasey, daughter of Lori O'Leary
Kasey, daughter of Lori O'Leary

Kate and her father Frank McCullough
Kate and her father, Frank McCullough

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