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"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.)
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