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New and Notable from
AMD Alliance International
The Global Voice of Low Vision |
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Dear Members:
It's been a busy time at AMD Alliance International and there's a lot to tell you about in this communiqué created specifically for our organizational members.
After our recent annual general meeting in Sao Paulo, Brazil, we came away with a renewed sense of hope about what we can accomplish together to provide hope and help to people living with macular disease. Working together we can win this battle!
David Herman
Chairman, AMDAI
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| New Advocacy Tutorial from AMDAI |
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Increasing access to low vision rehabilitation, sight-saving treatments, and much-needed funding for research is a top priority to AMDAI members throughout the world. In today's era of financial constraints, however, it is often necessary to fight to have low vision needs prioritized by decision makers. Luckily, a number of organizations, including CNIB and RNIB, have demonstrated success in advocacy campaigns to create changes that benefit people with macular disease.
Using their winning strategies as best practice examples, AMD Alliance International created an advocacy tutorial to guide you through the process, from start to finish: defining the problem and writing materials all the way through successful execution and evaluation. You can do it!
Using proven strategies from these successful treatment advocacy campaigns, you will learn how to conduct a winning campaign in virtually any area of patient need. This resource is available free of charge on our website: |
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| Science Panel Round Up |
Our expert Science Panel recently convened in Paris, under the leadership of Alan Cruess, MD, and Frank Holz, MD, to discuss the latest news in macular disease and chart directions for AMDAI. Our thanks to AMDAI member Retina France for also involving famous French singer and Sarkosy advisor Gilbert Montagné. This brought much media attention to the event.
The Science Panel reviewed many exciting research projects and novel ideas that offer great potential for the treatment of AMD. The panel also discussed stem cell research and cautioned that a long term view is necessary, given that we are at least five to ten years away from having clinical trial data and possible treatments based on stem cells.
AMDAI's expert medical advisors, many of whom are retinal specialists themselves, recommended AMDAI create more physician education tools to help doctors and patients talk together about macular disease, and chances and rate of disease progression.
The Panel noted that the cost of blindness to society is generally underestimated by decision makers and agreed that further work in this area is necessary.
Other topics covered at the meeting included the pros and cons of genetic testing, developing a consensus on the definition of AMD, understanding the relationship between geographic atrophy and neovascular AMD, and creating more comprehensive quality of life assessment tools.
The AMDAI Science Panel is made up of the world's foremost leaders in ophthalmology and clinical research. Their contributions to furthering our mission are critical. AMD Alliance International will continue to work through the panel to address those issues that have the greatest impact on patients. We are now finalizing the publications and media outreach that the Science Panel knowledge makes possible. A copy of the full Science Panel report is available upon request to info@amdalliance.org 
Left to right: Wanda Hamilton, Dr. Peter Humpries, MacDonald Curran, Dr. Robert Finger (back), Dr. Gregory Hageman, Dr. Frank Holz (back), Dr. Usha Chakravarthy, Dr. Emily Chew, Dr. Alan Cruess (back), Dr. Francesco Bandello, Dr. Gerald Chader (back), Dr. Bruce Rosenthal, Dr. Ian Johnston (back), Isabel Mueller, Dr. Sarah Feaver, Dr. Au Eong Kah Guan.
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| Annual Meeting in Sao Paolo |
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AMDAI Members from all across the globe came together in Sao Paulo recently to discuss how they will work together to make the world a better place for people with macular disease. The overarching commitment and theme of both meetings was that AMDAI plays an essential role in speaking from the patient perspective, with a united global voice. Four key interrelated and patient-driven themes emerged that will continue to define us:
1. Providing Leadership Expertise: AMDAI should play a global leadership role in providing expert information about macular disease, and in bringing people and organizations together to create this expert information.
2. Creating Unity: AMDAI is the global voice of low vision and should create partnerships with other international organizations to advance the interests of people with low vision.
3. Driving Advocacy: Patient advocacy and multi-sectoral partnerships are essential to achieve our aims, and AMDAI must partner with its members to share knowledge and provide patient advocacy leadership to those not experienced in this tradition.
4. Supporting Emerging Needs: AMDAI should take a long term view which includes building global awareness and capacity in both developed and developing countries. This is because trends of smoking, obesity and aging populations in developing countries may signal that the incidence of macular disease is quite likely to increase there also.
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| Mark Your Calendars |
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It's never too early to start planning for AMD Week! |
| AMD Alliance International is calling on all members around the world to celebrate AMD Week, September 20-26, 2009. By participating in AMD Week, you can join a global effort to increase awareness of macular disease and the need for regular eye exams. The Communications Committee of AMDAI is coordinating plans for AMD Week including viral campaigns and outreach to the media. For more information, or to participate, contact Communications Committee Chair, Tamara Petrou at tpetrou@ ffb.ca. |
| Patient Perspectives Essential, Ambassadors Required! |
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Ensuring that the patient perspective is top of mind with clinicians and researchers is a key objective of AMD Alliance International. To that end, patient ambassadors from AMDAI participate in meetings and conferences around the globe to ensure that the needs of patients, including quality of life supports, are being adequately addressed when research projects are being considered and public policy is being set.
Patient ambassador MacDonald (Don) Curran spoke at the Ageing Eye Conference in Bonn, Germany and AMDAI CEO Wanda Hamilton addressed The National Eye Health Education Conference in Philadelphia, USA. In other news, patient ambassador Betty-Ann Baker spoke at a well-attended Tokyo press conference, providing essential patient perspectives to a large and receptive audience of journalists who were eager for information about macular disease.
We have constant and ongoing need for patient ambassadors, and we welcome member interest in the speakers program. Please contact us at info@amdalliance.org if you have patient speakers who may be interested in international speaking opportunities.
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| In Search of a Comprehensive Resource Listing |
We've been asked to supply members and patients with a comprehensive listing of low vision support organizations and resources for all things macular disease. If you are aware of a such a list being maintained somewhere now, or would like to work with AMDAI to help create one, please contact Allie Laban-Baker at allie.labanbaker@amdalliance.org. |
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| Did You Know? |
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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 exhanged and knowledge broadly shared.
Please feel free to reprint any AMDAI report, information or stories from our newsletter "News You Can Use" or our website, www.amdalliance.org. 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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