People who have age-related macular degeneration (AMD) are dealing with a lot of issues. Losing vision, having wet AMD and needing to get repeated injections into the eye - or having dry AMD and not have any treatment at all available. No wonder patients can be discouraged.
One of the most important things the Macular Degeneration Partnership gives them is hope. Our monthly email newsletter reports on all the latest scientific research and clinical trials for both kinds of AMD.
It's been a remarkable few months in the research community, with multiple clinical trials for age-related macular degeneration. Upcoming treatments include some for dry AMD, which currently has NO treatment, improvements to wet AMD treatments and restoration of vision for the blind.
The stem-cell therapy by Advanced Cell Technologies (ACT) is continuing in clinical trial at a nice pace. So far, there are 4 trial centers, each recruiting groups of patients with age-related macular degeneration or Stargardts (a juvenile form of macular degeneration). The first groups received 50,000 stem-cell derived retinal cells, but we're already into the second groups, which are getting 100,000 cells. So far, everyone is doing well, there are no significant complications and some people report improvement in vision. It's still too early to tell if this therapy will prove successful, but we're well on our way!
In the meantime, the Macular Degeneration Partnership encourages people to eat a healthy diet of vegetables, fruit, fish and whole grains, wear sunglasses, get some exercise - and stop smoking. All these steps can help reduce the risk of macular degeneration.
In September, the Partnership will have a booth at the AARP Life@50+ Event, where we will screen seniors for AMD, give them information and Amsler Grids, and answer their vision questions. If you are going, stop by and say hello. Mention Global Giving and we will give you a special gift.
We'll be using the AARP meeting to kick off International AMD Week 2012. Watch for more information on this global campaign.
The National Eye Institute has designated May as Healthy Vision Month in the U.S. As it happens, May is also Older Americans Month - so how appropriate is that for seniors at risk for age-related macular degeneration (AMD)?
Actually, we are all at risk for AMD - yes, even YOU. Some of the risk factors are things you can't do anything about, like - your age, eye color, genes and gender. And even if you are young, you're going to want to start early to control the risks that you can, like - smoking, diet, weight, cholesterol, high blood pressure, sun exposure.
But, how do you know if your eyes may have a problem? Interestingly, you may not know unless you get an eye exam. And early detection may save your sight.
To remind people of the importance of getting an fully dilated eye exam, the Macular Degeneration Partnership has launched a Facebook campaign in May, posting daily information and curious eye facts. The May issue of AMD Update will also focus on early detection and early treatment. If you haven't visited the Facebook page of the Macular Degeneration Partnership, or subscribed to AMD Update, you can follow the attached links.
On May 23, the Partnership will be at the "Boomers and Beyond" health event at the Santa Monica Civic Auditorium in Santa Monica, California, to test the vision of those most at risk. We'll rush from there to an AMD Support Group in Beverly Hills, where an expert on low vision will demonstrate devices that can help those with vision loss.
The very next day, a collaborative group will present, "What's New in Low Vision". The audience at this free event will hear from the experts and then have a chance to try out some devices and techniques for themselves. It takes place at the Veterans Auditorium in Culver City.
It's a busy month! For more information, visit our website or contact us at 888-430-9898. And don't forget to schedule your eye exam!
2011 was a GREAT year for the Macular Degeneration Partnership program. Your support has helped us to accomplish so much in helping those with age-related macular degeneration (AMD).
Visits to our website, AMD.org, went up 120%, with over 16,000 individuals a month staying up to date on treatment and research. Subscribers to AMD Update, our free email newsletter, have skyrocketed and 30 more people a week sign up to receive these updates.
But one of the most important things is our very personal, direct and professional support for patients and families. Your gift has allowed us to continue this unique service. Our toll-free warm line provides help and hope to hundreds of people a year. We stay on the phone with callers as long as necessary, until all their questions have been answered. We do the same for those who contact us by email.
Callers always tell us, "My mother felt SO much better after talking to you!" Just today, I received a thank you email: "Thank you for your response to my question. It was the best one that I have received."
We are now holding support group meetings in two locations in Southern California, every month. Our goal is to expand these in 2012, so more people can meet others with AMD and learn to cope with vision loss.
Thank you for everything you have done to support this important service!
Do you know about the survey that found people are more afraid of going blind than almost anything else? That if they could, they’d trade off years of life in return for keeping their sight?
Jackie understands. At age 58, her doctor told her, “You’ll be blind in 5 years. You have macular degeneration just like your mom. ” She’s a teacher and can’t afford to lose her sight and she was angry. “You can’t tell me I’m going to go blind and then send me out the door without any information or any guidance!”
So, she did some research herself and found the Macular Degeneration Partnership (MDP).
After talking to our one on one counselor at MDP, she understands that age-related macular degeneration (AMD) causes central vision loss, not complete blindness. She also learned the healthy habits that may slow down the progression of the disease. And now that she’s signed up for the free AMD Update e-newsletter, she has a reliable source for the latest in research and treatments.
“You saved my life that day.” she says. “I felt my world had come crashing down. Now I feel that a weight has been lifted off my shoulders. Thank you for spending so much time on the phone with me, answering my questions.”
Thousands of people with AMD – and their family and caregivers – have found help and hope at the Macular Degeneration Partnership because of your donations.
If you call our toll-free “warm line”, you are able to talk to a caring professional who can answer your questions and direct you to resources near your home. You can sign up for the monthly email newsletter to stay on top of the latest in research. Attend a support group. Get an AMD Toolkit. Visit the website, AMD.org, to read about the tests your doctors performs, find a clinical trial and learn about low vision rehabilitation.
As we approach the Thanksgiving holiday, we take this opportunity to thank YOU for your support. You have helped people like Jackie find hope, information, and tools for living successfully with macular degeneration. For her, and thousands more, your gift has meant so much. Thank you.
One of the most important things your donation helps us to do is the AMD Update. This free monthly email goes to thousands of people with age-related macular degeneration (AMD) and to their family members.
Macular degeneration is a frightening condition with no cure - and only 10% of people are able to get treatment. The newsletter accomplishes so much for those we serve.
It reminds them to keep checking their vision for changes - if they do develop wet macular degeneration, we do have treatments that can save their sight!
It keeps them up to date on all the research, which is very hopeful. There is a new therapy for wet AMD that the FDA should approve this month, that will reduce the number of eye injections people need.
For the majority of AMD patients with dry macular degeneration, the research news is very exciting. With AMD Update, we keep them up to date on promising potential treatments, including a medication by mouth and the use of daily eye drops that may prevent progression and even reduce the damage.
For someone facing severe vision loss, hearing these hopeful messages, as well as gaining practical advice, makes all the difference in the world.
Thank YOU for making a difference to the life of a senior with macular degeneration.
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