Book Recommendation

December 21, 2014

Here is a holiday book suggestion for people living with macular degeneration and stargardts. I highly recommend the book  Glimpse: A Telling Tattle by D.S. Sully.

You can get the book for Kindle and on Amazon.

Lauren Tappan

Chicago Lighthouse for the Blind

December 21, 2014

The following is from Lauren Tappan:

The Chicago Lighthouse has a helpful website and several videos on YouTube showing how to use assistive technology devices such as the KNFB Reader App, the Victor Reader Stream, the Eyepal ROL, etc.

Questionable Remedies for Eye Disease

December 20, 2014

Once again the effect of nutrition on eye disease is brought into question, this time in the NY Times.

A few years back, a big clinical trial showed that certain nutritional supplements could slow the progression of macular degeneration and reduce the risk of vision loss. The trial showed that one thing they could do was to take a specific formula of vitamins, minerals and other nutrients. Manufacturers quickly responded with a host of over-the-counter pills making a host of claims.
The clinical trial called AREDS (Age-Related Eye Disease Study), conducted at 11 medical centers around the country by the National Eye Institute, found that a supplement could reduce the risk of worsening macular degeneration and severe vision loss by 25 percent over six years.“But the benefits of the nutrients only apply to certain stages of the disease,” Dr. Scott pointed out. “The formula could slow the progression in patients with either intermediate age-related macular degeneration or with advanced macular degeneration in only one eye.”
It didn’t work for people with milder forms of the disease, or with advanced age-related macular degeneration in both eyes. It didn’t prevent people from getting the disease in the first place. It didn’t cure anybody. But it was the best doctors could offer most patients with macular degeneration, apart from lifestyle modifications like stopping smoking.

So only people with intermediate or advanced stage macular degeneration should take eye supplements.

The AREDS Formula:

- 500 mg vitamin C

- 400 IU’s vitamin E

- 15 mg beta-carotene (for smokers) OR Lutein/Zeaxanthin

- 80 mg zinc as zinc oxide

- 2 mg copper as cupric acid

For more info:

ZoomText for Free

December 17, 2014

While doing her Christmas preparation, Gail Johnson has come across her copy of ZoomText 9.1.

In keeping with the spirit of the season, she is generously offering it to a needy person. If you have low vision, just write to her, explaining how you will give it a good home. Not for resale.

Her email address is

Thank you Gail. A truly gracious offer.

Stargardt’s and Nutrition

December 16, 2014

This article by  Lauren Tappan and

Vitamin A and Stargardt’s – Part 1

 The only advice I was given when diagnosed with SD was that vitamin A was causing my vision loss and to not take supplements with Vitamin A. This totally contradicts the widely known fact that Vitamin A is essential for eyes. It’s not that this fact is incorrect, it’s that it doesn’t wholly apply to SD.
A paper published in Cell Death and Disease this year gives a good overview of the mechanism leading to vision loss and how Vitamin A is implicated. Essentially, SD is caused by an accumulation in the RPE of Vitamin A dimers (dimers are two molecules joined chemically), which are known as A2E (shortened version of the chemical name). Using an in vivo model, they found that increased A2E led to greater cell death.
So now we know vitamin A is not our best friend, where do we go from here? Part 2 will discuss diet and vitamin A and how we can ensure not to overload vitamin A and contribute to the SD process.
Lauren highly recommends taking a few minutes to look over this blog from Chrissy in Australia about stargardts disease. She has some interesting ideas about diet and supplements and stem cell research for stargardts. Also the affects of vitamin A. Check this out.

Minds Eye Travel

November 30, 2014

The following by Lauren Tappan:

Mind’s Eye Travel is an organization that creates tours for people who are blind or visually impaired.

Our prices include sighted guide assistance and help with the following:

Immigration Documents
Boarding Passes
Cruise Line Bag Tags
Embarkation & Disembarkation
Orientation While Onboard Ship
Shore Excursions
Braille Menus (when available)
Airline Bookings

Passau to Budapest
Viking River Longship Njord
8 Days, 6 Guided Tours, 4 Countries
May 2, 2015

This 8-day itinerary takes you through four of Europe’s most enchanting
countries along the storied Danube River; Austria, Germany, Hungary and
Slovakia. Explore Budapest’s imperial and Art Nouveau delights, and take a
comprehensive tour of beautiful Bratislava’s baroque and Gothic buildings
and fountains. In Austria, discover why Vienna is “the waltz capital,” sail
through the spectacular Wachau Valley, and explore the cobblestone streets
and charming town squares of Dürnstein. And in Germany, admire Passau’s
ancient fortress and Italianate architecture. Includes a tour of the
900-year-old baroque Benedictine abbey at Melk and a full-day excursion to
the scenic city of Salzburg.

for more info:

Blindness Fact Sheet for Stem Cell Research

November 30, 2014

Calif. Inst. for Regenerative Medicine funds several research projects working to understand the basic mechanisms of macular degeneration and to develop novel stem cell-based therapies for the disease.

Nearly a million Americans are blind, with another 2.4 million suffering significant visual impairment. While there are several causes of blindness, the leading cause of all visual impairment is age-related macular degeneration, which affects 1.7 million Americans.

California’s stem cell agency funds research into potential therapies for three of the causes of blindness. All the research teams are seeking to use various forms of stem cells to rescue or replace cells in the eye damaged or threatened by the diseases. Several groups are working on ways to restore vision for people with age-related macular degeneration (AMD). Other projects are looking to preserve vision in patients with retinitis pigmentosa, and to restore clarity to the surface of eyes impacted by corneal disease.

Macular degeneration

In AMD the layer of cells that support the photoreceptors is destroyed. Without this support system, the photoreceptors, the cells that actually allow us to sense light start to malfunction. CIRM-funded teams are looking at various methods of replacing this layer of support cells called RPE (retinal pigment epithelial) cells. Some are using embryonic stem cells as a starting point to generate new RPE cells. Others are using stem cells obtained by reprogramming adult cells to be like embryonic cells, which could potentially come from the patients’ themselves.

Retinitis pigmentosa

Retinitis pigmentosa, an inherited and progressive vision loss that leaves most patients legally blind by mid-life, directly destroys the photoreceptors. CIRM-funded researchers are seeking to use stem cells to rescue the receptors from further damage and potentially replace them with new ones.

limbal stem cell deficiency

The cornea, the outer surface of the eye, is constantly refreshed by stem cells that reside in neighboring tissue. But some people just don’t have enough of these stem cells, called Limbal stem cells, to make enough new cornea cells. CIRM-funded researcher are trying to correct this condition, limbal stem cell deficiency, by retrieving the few existing limbal stem cells, and using various techniques to expand them in the laboratory until there are enough cells to rebuild a healthy cornea.

For more detailed information:


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