Home

LINKS/INFO

It was from Karl Stargardt, a German ophthalmologist, that Stargardt's Macular Dystrophy derived its name in 1909. It is the most frequently encountered juvenile onset form of the group of conditions known as 'macular dystrophies'.

Listed below are some sites and support group addresses that I thought would be of interest to those interested in Stargardts Disease.

Please send me an e-mail if you find any others and I can update the list.

Inspiration
Judy's Jolts of Hope - link submitted by Judy who says "It is about my struggle towards acceptance of Macular Degeneration which hopefully might help others better understand this devastating eye disease."

eSight Careers Network™ - submitted by Nan Hawthorne who says "Career skills for visually impaired people. I am a content developer for them and myself have Stargardts."

Information
NEW! 20/02/2010 Dan and Nancy Lynch wrote:
"Hello,
I am thankfully not a victim of stargardt’s, but I found your website. A company from Worcester, MA called Advanced Cell Technology is seeking approval from the FDA to do clinical trials on humans who have Stargardts using a stem-cell derived treatment. Approval could be as soon as February. Just thought that you would like to know.

Here is the Press Release about the IND filing."

NEW! 08/10/2009 Richard Windsor wrote:
"I am pleased to announce the opening of BiopticDrivingUSA.com. I invite you to tour this new website. It is the most comprehensive site on bioptic driving ever developed in the USA. It includes information on state laws for bioptic driving, animations and videos to better explain the process, history of bioptic driving and extensive information on training of drivers. It also includes a section on complex bioptic driving cases. It will soon include in-car videos of bioptic driver training. Most important we present the stories of many bioptic drivers. The Indiana bioptic driving program has served as a model due to the many checks and balances in the process and the extensive training require.

Richard L Windsor, O.D., F.A.A.O., D.P.N.A.P.
Laura K. Windsor, O.D., F.A.AO.
The Low Vision Centers of Indiana
The Eye Associates Group LLC
(765) 348-2020
richw@eyeassociates.com"

Wikipedia now has a posting for Stargardts Disease.

Foundation Fighting Blindness has a whole section on just Stargardts as well as forums etc.

Vaughan Hillier wrote: "I am happy to announce that your website inspired me to set up a website specifically for Australians with Stargardts Disease. The address is: www.stargardts-au.org."

I have received a few e-mails about Dr. Nolan and his treatment that seems to help patients with Stargardts. He has a website at: www.nolaneye.com/.

Kris W. at spacialistics@yahoo.com wrote:
"Hi, I just wanted to make you aware of an eye doctor in Connecticut, Dr. Nolan. This doctor is having great success in improving the vision of people with Stargardt Disease and other eye conditions by administering Echothiophate eye drops. I myself have been seeing him for a few weeks now and my vision is improving. granted I'm not seeing 20/20, but its great. His website is www.nolaneye.com . If you need anymore info. please e-mail me back."

See also Loretta's story

THE CHECKERED EYE PROJECT works to increase awareness of the Checkered Eye emblem, a new option for communicating the fact that a person has low vision.

"Macular Degeneration" by Dr. Lylas G. Mogk, M.D.
"This is a great new book" wrote Tom Perski.

RNIB in England provides information as well as contact addresses.

Western Australian Retinitis Pigmentosa Foundation has a section on Stargardts.

MD Support - The Eyes of the Macular Degeneration People -
offers excellent support via information, chat channel options, e-mail support etc. Even includes some photos showing how MD affects our vision. I highly recommend joining in at the Stargardts Room at MD Forum. See also the section under Library/ Eye Conditions about Stargardts.

The Macular Degeneration Foundation - contains a good link page as well as option to get a chat channel and e-mail list.

LOVNET is the world-wide-web interface for the Low Vision Research Group (LVRG), providing an Internet resource for researchers, clinicians, and others with an interest in low vision.

Access and Equipment

NEW! Axistive - World's Leading Assistive Technology News Portal

Blindness Resource Centre has a good listing under "Low Vision resources" and "Access" for computer adaptive devices

Ai Squared - Leaders in Low Vision Software.
I use Zoom Text and will now use Zoom Text Xtra Level 2 with Speech - you can download a free 30 day trial version!

The Low Visoin Gateway which is an excellent resource including links specifically for Stargardts

Addresses of Support Groups
Association for Macular Diseases
210 E. 64th Street
New York, NY 10021
(212) 605-3719
- Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.

Macular Degeneration International
is now a part of Foundation Fighting Blindness
Toll Free Helpline 1-800-683-5555
EMail: MDInfo@blindness.org
- Provides support for people affected by inherited macular degenerations including Stargardt's disease.

Home