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New and Notable from
AMD Alliance International
The Global Voice of Low Vision |
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Dear Members:
The end of the year is a wonderful time to look back, reflect on our collective accomplishments and to gaze ahead to see what is still needed to achieve our goals and objectives.
Whether through advocacy efforts to ensure the rights of patients, awareness campaigns, research into new treatments, or support programs, each and every day throughout the year, you are making a real difference to people living with the challenges of macular disease.
In this issue of New and Notable, we want to share with you the great work of some of our members. For future issues, if you have a program you would like to share with the world, please let us know!
We have a lot to be proud of in 2009, and I am confident that with your hard work and dedication in the year ahead, we will continue to make the world a brighter place for those living with macular disease.
Wishing you the very best for a joyous holiday season and a Happy and Healthy New Year.
David Herman, Chairman | |
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RNIB's
Lost and Found Campaign Calls for
Support for People Losing Vision
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 As
people with macular degeneration know all too well, when you lose your sight,
you lose more than your ability to see. Losing sight can have a
devastating impact on people's independence, family life, work life and self
esteem. To help create much-needed
awareness about the difficult emotional and practical impact of losing one's
vision, the Royal National Institute of the Blind (RNIB) recently launched its
"Lost and Found" campaign.
The campaign also aims to raise vital funds to be able to help all blind and
partially sighted people find their lives again and provide all the services
and support they need to live independently.
New research from RNIB reveals that 1 in 3 people would miss their
independence the most if they were to lose their sight. The research also
reveals that blind and partially sighted people are likely to undergo a
bereavement process for the life they feel they have lost. In addition, the report shows evidence
of a widespread lack of information and support that leaves many isolated and
depressed, with no idea of where to find help.
As part
of the Lost and Found initiative, RNIB will be campaigning to make
sure that the patient information in eye clinics, general practitioners offices, and
hospitals is provided promptly and in a format the patient can read; ensure
that high-quality information, advice and support services are routinely
available to everyone who experiences vision loss; and make sure that counseling
and emotional support is available to everyone who loses their sight.
To find out more, click here: RNIB.
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Good News from The Macular Degeneration Foundation:AMD Awareness is Growing in Australia
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|  Proof that awareness campaigns do pay off! The Macular Degeneration Foundation (MDF) in Australia
recently reported on national research indicating a massive increase in the Australian
public's awareness of macular degeneration. Over the last two years there has
been an increase in awareness of MD by 53% from 47% (Feb 07) to 72% (Sep 09).
Julie
Heraghty, MDF's Chief Executive Officer said "We were alarmed at low awareness
levels from polling results received in Feb 2007, especially considering Australia's aging
population and the importance of early detection to save sight. The Foundation
was determined to turn this around and we embarked upon a significant TV, radio
and print campaign combined with unique projects. We were supported by
outstanding partnerships and Government recognition of the importance of eye
health."
In
Feb 2007 only 47% of Australians were aware of macular degeneration and only 58% of people in the
at-risk group for AMD were aware
of this disease. Furthermore, only 32% knew this disease affected the eyes and
only 1 in 3 over the age of 50 had claimed to have had their macula checked. The
research showed that most Australians simply did not know where the macula was,
let alone that AMD affects the eyes.
However,
the 2009 national research shows that the overall population awareness of
macular degeneration has increased by 53% (from 47% to 72%). Population
awareness for people over 50 increased by 48% (from 58% to 86%). Awareness that
macular degeneration affects the eyes increased by 90% (from 32% to 81%). In addition, the research further indicated
that those over age 50 who had their macula checked in the last 2 years
increased by 75% (from 33% to 58%).
MDF
also reported that optometrists across the nation are reporting that the
Foundation's awareness campaign is driving those at-risk of AMD, not only to have
their eyes tested, but also to ask about their macula. This is a significant
result, said Ms. Heraghty.
While everyone at the MDF is very pleased with the results, they are aware that more work is needed. "The Foundation
will continue to raise awareness to encourage at-risk Australians to visit
their optometrist, have their macula checked and save sight," said Ms. Heraghty. For more information visit MDF online.
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Retina France's "A Thousand Choirs for One Vision" to Celebrate 15 Years
with French Singing Legend Gilbert Montagné |
 For the past fourteen years, Retina France
has championed a unique concept in France: "Mille Choeurs pour un Regard" or "1000 Choirs for One Vision."
Last year more than 2000 choirs participated in 700 concerts
to raise awareness and funds for Retina France. The concerts raised more
than 430,000 Euros and will fund research programs for retinal diseases.
This year, Retina France has the support of Gilbert Montagné the legendary French musician
and singer who has been blind from birth. He is best remembered for his
international hit "The Fool", which was a number one single across Europe in 1971.
Gilbert Montagné
composed an original song for this year's events and each choral group
is encouraged to perform the song during their program. Mr. Montagné also recorded the song on CD. For more information visit the Retina France website.
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Annual General Meeting Update
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The program committee has been hard at work to plan an exciting meeting in Vienna at the AMD Alliance International Annual General Meeting and Meeting of the Board of Directors. Topics will include an update from AMDAI's Science Panel, and update on new treatments in the pipeline for dry AMD, genetics, the role of nutrition, radiotherapy, and a session on Health Technology Assessments. There will also be a poster session where organizations can share "best practices" with attendees.
The meetings will be held in conjunction with the Science Panel Meeting on April 16-18, 2010 and will bring together AMDAI board members to collaborate on the most critical issues facing patients today. Detailed information is forthcoming. In the meantime, if you have any questions, please email us at info@AMDalliance.org. |
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| AMDAI is Here to Be Your Global Resource |
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AMDAI exists as the global network to provide hope and help for people living with macular disease. We know that each and every day you too are hard at work making a positive change for people with macular disease. Our hope is that our resources can be freely exchanged and knowledge broadly shared. We were delighted to hear from our colleague Ms. Julie Heraghty at the Macular Degeneration Foundation in Australia about the usefulness of the recent report on current research created by AMDAI from the American Academy of Ophthalmology Meeting. MDF plans to share the information with their members both online and in their upcoming annual report. We urge you to do the same!
Please feel free to reprint any AMDAI report, information or stories from our newsletters or our website, www.amdalliance.org. We are glad to be your global resource! | |
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AMD Alliance International
Bringing Hope and Help to People Living with AMD
AMD Alliance International is the only international organization in the world dedicated exclusively to promoting awareness, treatment and research into macular degeneration, the leading cause of vision loss in the developed world. With 67 organizational members in 25 countries, we are a prominent membership organization comprised of the worlds' leading vision, seniors and research organizations.
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