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Eyes Only: Our Quarterly Newsletter
The association publishes a quarterly newsletter that updates members on medical advances in the field of macular diseases, advises on newest developments in low-vision aids as well as counsels those afflicted with macular diseases.
Winter 2010 Newsletter Winter 2009 Newsletter Click
here for information on how to obtain INJECTION-FREE AMD DRUG THERAPY: MacuCLEAR, Inc. and Mystic Pharmaceuticals, Inc., two Texas-based medical corporations, recently announced preliminary successful results of a Phase 1b Clinical Trial for the treatment and prevention of the progression of age-related macular degeneration (AMD) FIRST NEW EMBRYONIC STEM CELL LINES APPROVED FOR USA: Thirteen enbryonic stem cell lines were approved in December for use by U.S.-funded researchers, as reported in a story by Bloomberg News. These are the first of hundreds of cell colonies that may become available under new policies promised by President Barack Obama. ADVANCES IN RETINAL GENE THERAPY: A study reports successful, sustained results that showed notable improvement in children with congenital blindness. WORTH INVESTIGATING: The "Honey Bee" Keyboard. • Download the entire Winter 2010 Newsletter The Visually Impaired Information Center, Inc., headquartered in Livonia MI, publishes a directory of resources aimed at enhancing the lives of the blind and visually impaired. The directory contains nine hundred listings in twenty two categories. The directory is available on the internet at The Visually Impaired Information Center where information is periodically updated. Copies of the directory in its various forms can be obtained by writing to: The Visually Impaired Information Center,P.O. Box 51207, Livonia MI 48151-5207, or calling 734.421.6599. Whether a tiny yellow pigment is the main element standing between many older people and AMD is under study at Augusta's Medical College of Georgia (MCG). Researchers are measuring this macular pigment that sits on the retina at the fovea, the point of highest vision acuity and best color vision, to better understand what a healthy, normal pigment looks like, says Dr. John Nolan, vision scientist and Fulbright postdoctoral fellow in the MCG Department of Ophthalmology. The thinking is that the thinning of this pigment - comprising yellow anti-oxidants that come from food or dietary supplements - opens the door for retinal destruction, the hallmark of AMD. The hope is that measuring this protective pigment will one day be part of routine vision screening and that AMD will lose its distinction as the leading cause of loss of central vision.
Westinghouse Lighting has developed the chrome-top Eye Saver bulb to direct concentrated light where one needs it most. The bulb, designed in association with NASA, effectively concentrates the maximum amount of light toward reading material, hobbies or crafts. The bulb's lightly frosted finish reduces eye strain by diminishing glare and produces 40% more light than a standard incandescent bulb of equivalent wattage. Eye Saver bulbs come in two models. The first is a 125 watt version; the other is a 3-way configuration - 50, 125, 175 watts. Each bulb has a life rating of 2000 hours. The price range of the bulbs is $8.99-$11.99 per bulb. To locate a retailer convenient to you that sells Eye Saver bulbs, call toll free 1-800-999-2226. The Macula Foundation, Inc. has very generously made available copies of its newly updated soft-cover book,"Age-Related Macular Degeneration". For information on how to receive your free book, download the Winter 2009 Newsletter. • Download the entire Winter 2009 Newsletter 2008 is the 30th anniversary year of the Association for Macular Diseases, Inc! A University of Kentucky ophthalmologist, along with teams of scientists, has discovered a genetic mutation that offers protection against the dry form of age-related macular degeneration (AMD). The study, published recently in The New Englnd Journal of Medicine, identifies the mutation of a normal immune-system receptor called toll-like receptor3 (TLR3). The normal form of the gene is linked to dry AMD. Some eight million Americans have the disease. NIHSeniorHealth.gov is a website you should know about and get to use. It is a source of a wealth of professional and timeless information that is important for you. The website makes age-related health information -
of course including AMD - easily accessible for family members and friends seeking reliable and easily understandable health facts. The website's senior-friendly features include large print, short easy to read information segments, and navigation. A "talking" function reads the text aloud, and special buttons to enlarge the text or turn on high contrast make the text more readable. A year ago, we ran a piece on the potential benefits of including omega-3 fatty acids in one's diet to lower risks of age-related macular degeneration (AMD). A recent article in Science Daily reported on a mega-analysis of nine different studies previously published on the subject. When results from all nine studies were combined, a high dietary intake of omega-3 fatty acids was associated with a 38% reduction of late (more advanced) AMD, while eating fish twice a week was associated with a reduced risk of early and late AMD. However, the authors of the analysis note that the accumulated evidence from these few clinical trials is insufficient to support regular consumption of high omega-3 foods for AMD prevention. • Download the entire Autumn 2008 Newsletter • There is new hope for regenerating a human retina that has been damaged by disease or injury. Scientists at the prestigious Schepens Eye Research Institute in Boston have discovered what chemical in the eye triggers the dormant capacity of certain non-neuronal cells to change into progenitor cells, a stem-like cell that can generate new retinal cells. The discovery, published recently in Investigative Ophthalmology and Visual Science (IOVS), offers new hope to victims of diseases that harm the retina, such as macular degeneration. "This study is very significant. It means it might be possible to turn on the eye's own resources to regenerate damaged retinas, without the need for transplanting outside retinal tissue or stem cells," said Dr. Dong Feng Chen,
associate scientist at Schepens Eye Research Institute and Harvard Medical School. • COMPARISON OF AMD
TREATMENTS TRIALS: In February, the National Eye Institute (NEI) of the National Institutes of Health (NIH) announced the start of a multi-center clinical trial to compare the relative safety and effectiveness of two drugs currently used to treat wet age-related macular degeneration (AMD). The two drugs are Lucentis (ranibizumab) and Avastin (bevacizumab).
Lucentis was approved by the U.S. Food and Drug
Administration (FDA) in June of 2006 for the treatment of neovascular, or wet, AMD. The approval was based on evidence from clinical trials showing that Lucentis slows the progression of vision loss from wet AMD. In addition to slowing vision loss, approximately one-third of patients treated in these trials had some improvement in vision at 12 months. Avastin is a drug closely related to Lucentis. It was approved by the FDA in 2004 as an intravenous treatment for patients with advanced colorectal cancer and therefore has been available for what is called off-label use for other health conditions. It has been widely used off-label to treat wet AMD. Avastin is thought to remain in the eye longer than Lucentis and therefore may allow for less frequent injections. This clinical trial will be conducted at more than 40 clinical centers across the country. For a list of clinical centers, eligibility recruitments, and other information, go to
http://www.nei.nih.gov/CATT or call the CATT Coordinating Center at 1-215-615-1500.
• Download the entire Spring/Summer 2008 Newsletter "Growing
old is a bad habit that a busy man has no time to form." • This
past summer, Lucentis (ranibizumab), made by Genentech, was approved by the
U.S. Food and Drug Administration (FDA) to treat neovascular, or wet, age- related
macular degeneration (AMD). This followed the December 2004 approval of Macugen
and, like Macugen, Lucentis is injected by a retina specialist directly into
the eye. Lucentis appeared to stop disease progression in as many as 90% of
trial patients, even up to two years. In fact, most patients in the study regained
small amounts of vision, and 30-40% had significant improvement. • Bill
G. Chapman's 2001 book is: Coping with Vision Loss: Maximizing What You Can
See and Do. Hunter House, Alameda, Calif. (Mr. Chapman has had a severe case
of dry macular degeneration for more than 40 years. He has written this book,
in his words, to help a partially sighted person "use his or her remaining
vision to function as a sighted person.") Book #RC 55481, National Library
Service Talking Books Program. • Henry
A. Grunwald's 1999 book is: Twilight: Losing Sight, Gaining Insight. Knopf,
New York. (Former editor-in-chief of Time, Inc. publications and a past U.S.
Ambassador to Austria, Mr. Grunwald describes the adjustments he had to make
to remain as active as possible in his profession and lifestyle. He talks of
how other people deal with macular degeneration.) Book #RC 49236, National Library
Service Talking Books Program. • Mogk,
Lylas G., M.D. and Mogk, Marja (2003). Macular Degeneration: The Complete Guide
to Saving and Maximizing Your Sight (revised and updated). Ballantine Books,
New York. • Neer,
Frances Lief (1994). Dancing in the Dark: A Guide to Living with Blindness and
Visual Impairment. Wildstar Publishing. • Ringgold,
Nicolette Pernot (1991). Out of the Corner of My Eye: Living with Vision Loss
in Later Life. AFB Press, New York (large print). • Solomon,
Yale, M.D. and Solomon, Jonathan D. (contributor) (2000). Overcoming Macular
Degeneration: A Guide to Seeing Beyond the Clouds. Harper Paperbacks, New York.. • Various
publications from the National eye Institute are free and can be ordered from
their website at www.nei.nih.gov. For mail or phone contact: National Eye Institute
Information Office 31 Center Drive MSC 2510 Bethesda MD 20892-2510 1-301-496-5248 "My
contemplations are of time that has transfigured me • U.S.
Library of Congress Service for the Blind and Physically Handicapped is a free
lending library of more than 50,000 recorded books - i.e., talking books. Listening
to the cassettes requires non-standard players, which are also lent at no charge.
Besides books on tape, the service offers musical scores in Braille and magazines. • Robert
Johnson wrote an article on Closed Circuit TV: how helpful he finds it, how
one can customize its use, ways to lower the effective cost through a tax deduction,
the possibility of a free demonstration, availability through catalogues, helpful
tips before purchasing. • Descriptive
Video Service, or DVS, allows viewers watching a movie or PBS program on TV
to make sense of words printed on the screen or interpret what is going on during
scenes with no dialogue. TV equipment purchased since 1992 generally have a
second audio program (SAP) feature which can be activated. Information on where
to purchase or borrow DVS-treated films was discussed. • An
article by Jerry Rosenberg described how he coped with his diagnosis of macular
degeneration and the guidance Nick Stevenson provided. When
E.B. White failed to drive his 92-year-old aunt on their annual inspection
of fall foliage, he apologized. His Aunt Caroline reassured him: "Why, my
dear, remembrance is sufficient of the beauty we have seen." -- E.B. White,
essayist of The New Yorker magazine • A moving
article by Robert E. Johnson entitled "Coping, Not Moping." A series of progressively
debilitating ailments challenged Mr. Johnson to develop coping mechanisms so
as not to become despondent. He shared his thoughts as he dealt with the various
adjustments he had to face. • Four
books on living better with low vision were briefly discussed as to contents
and purchase information. Macular
Degeneration: A Complete Guide to Saving and Maximizing Your Sight by Lylas
G. Mogk, M.D. and Marja Mogk. Macular
Degeneration by Betty G. Wason Coping
with Vision Loss: Maximizing What You See and Do by Bill G. Chapman Living
Well with Macular Degeneration by Bruce P. Rosenthal, O.D.
"There
is immunity in reading, formal society, office routine, in the company of
friends and the giving of officious help to strangers, but there is no sanctuary
in the bed from the memory of another. The past with all its anguish will
break through any defence-line of custom or habit, but we must sleep and
therefore dream." -- Cyril Connolly • Reflections
on the impact of September 11th tragedy - so many people are grieving. • Those
who suffer from macular degeneration know that grieving is hard work. Hopefully
it leads to effective mechanisms for coping and the opening of vistas to a reasonably
acceptable future. • Following
the successful implantation of a tiny telescope into one eye of a German woman
with advanced macular degeneration, international trials were conducted. With
postoperative rehabilitation therapy to coordinate the magnified sight in the
implanted eye with the peripheral sight of the other eye, the operation is considered
to be useful for some ARMD patients who meet certain criteria. The Intraocular
Miniaturized Telescope (IMT) has been approved as an optical prostheses in the
European Community and is in the process of being submitted to the FDA in the
United States. • There
appears to be some benefit on macular health of eating dark green leafy vegetables;
they contain certain substances that are components of Vitamin A, essential
to sight. However, there is no scientific proof that the substances actually
do protect sight. Nevertheless, vitamin manufacturers have added the compounds
to their multivitamin products. Be aware that there are no government-recommended
daily dosages for the compounds. • Zinc
and selenium are trace minerals that have long been believed to be vital to
good vision, and some physicians recommend that their patients take them. • There
are many factors to be considered in taking vitamins, minerals and supplements.
Since all the biological effects of these items are not known, it's always wise
to consult a physician before taking them on your own. • About
six years ago, there was a major study sponsored by the National Eye Institute
on the effects of taking antioxidants and/or zinc. The findings: Vitamins, except
for those that are fat-soluble are generally considered nontoxic. This is also
true of metals (e.g., zinc), but they can be toxic in irrational doses "Wine
comes in at the mouth • Results
of eye research were reported at the most recent ARVO (Association for Research
in Vision and Ophthalmology). Examples include progress in stem cell research,
the effect of particular drugs and nutritional supplements on eye health, improved
diagnostic methods, studies in blood flow, refined microsurgical techniques
and instruments. • Research
is being done on creating sight using micro electronics implanted in the eye. • TV
or radio coverage of experimental treatments for ARMD may be misleading. Sometimes
it's a public relations effort to attract grants; sometimes it's the result
of a marketing effort to find paying customers for an expensive, unproven procedure. • Computers
are a great tool for performing everyday tasks such as communicating via e-mail,
keeping track of finances, etc. This applies to everyone, including the visually
impaired. There are programs available which enlarge text or in other ways enable
the visually impaired to use computers. • For
those who can see, there are precautions to take to minimize problems that might
result from prolonged viewing of a computer screen. "As
a beauty I'm not a great star, • Macular
Degeneration was initially identified in older people - men and women over 55. • In
the early 20th century a German ophthalmologist, Dr. Karl Stargardt, began seeing
a similar condition in much younger patients. Although Stargardt's Disease is
a form of macular degeneration, there are some differences between that condition
and age-related macular degeneration. For one thing, unlike ARMD, Stargardt's
Disease is almost always inherited - i.e., caused by genes. • Genes
that cause another, less common macular pathology, Best's Disease, have also
been discovered. • It
is commonly believed that finding the gene(s) causing a disease can lead to
prevention or cure. But, the identification is only a first step in discovering
what a gene fails to supply, synthesizing it, and administering it to a patient. • Research
on how genes mutate and sometimes begin a pathological process may eventually
lead to prevention or cure of age-related macular degeneration, but that time
is still far off. • A listing
of several sources which provide free catalogs for low vision aids. "We
are growing old together you and I. Let us ask ourselves, what is age like?
... One cannot read small letter books. Deeper and deeper one's old friends.
Fewer and few one's dealings with young men. One thing only, the pleasure
of idle talk, is as great as ever." -- Unnamed Chinese poet of the ninth
century • Article
entitled, Growing New Tops, by Mitzi MacDonald. She is a low visionary person
who offers practical tips and attitudinal changes that have helped her deal
with her failing eyesight. The title, Growing New Tops, refers to the ability
of giant sequoia trees to grow new tops when their highest branches have been
severed by a storm. • A list
of resources for audio tutorials that help visually impaired people learn to
use various computer programs is available. • Two
specific ideas were briefly discussed: a tutorial developed by the American
Printing House for the Blind on computer operating systems, and a talking web
browser developed by IBM which changes visual material into audio format. • Comments
by a low vision person who enjoys listening to short and medium wave radio stations
around the world. National Radio Club provides service. • Suggested
procedures for persuading Medicare to pay for closed circuit television after
they have refused to do so. • The
Veterans Administration offers ZoomText free to U.S. veterans. It is a computer
program that enlarges text on the screen. An advanced version incorporates electronic
speech. • Veterans
are entitled to visual aids, even though the visual impairment is not service-connected.
For
copies of these newsletters, or to receive or
write to: Association
for Macular Diseases, Inc. or
send an e-mail to: association@retinal-research.org about
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-- Historian and novelist Andre Maurois
And yet the beauties that I loved
Are in my memory.
I spit into the face of time
That has transfigured me."
-- William Butler Yeats
The books are:
And love comes in at the eye.
That's all we shall know for truth
Before we grow old and die.
I lift the glass to my mouth,
I look at you, and I sigh."
-- William Butler Yeats
Others
are handsomer by far,
But my face I don't mind it,
Because I'm behind it,
It's those in front whom I jar."
-- A.H. Euwer
Eyes Only on a regular basis, please call
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