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 links and support group addresses that can be of use to those interested in Stargardt’s Disease. Please send an e-mail to info@stargardts.net if you find any others and I can update this list. The most recently added links are at the top of each section.


Research
ACT Confirms Clinical Trial Participant Showed Improvement in Vision from 20/400 to 20/40 Following Treatment – May 16, 2013

Preventing blindness from age-related macular degeneration and Stargardt’s disease – Research regarding “vitamin A dimers” at Columbia Technology Ventures, Columbia University, New York.

UK medics lead Europe’s first embryonic stem cell trial – from BBC News regarding Stargardts – “They will inject retinal cells into the eyes of 12 patients with an incurable disease, Stargardt’s macular dystrophy …”. – BBC, 22 September 2011

Expert Answers on Stargardt’s Disease – The New York Times, July 21, 2011


Blogs
THERI14 Stargardts blog and random thoughts – was newly diagnosed with late onset Stargardts and is new to blogging.

Libby, who has Stargardts, has an excellent blog included on her The Checkered Eye Project website.

The Ever Changing Perspective of Essceejulies – Sharina’s description of her blog is: “Blog chronicling my ever chaining perspective of this world based on my opinions and the changes in my vision due to Stargardt’s Disease.”

Excellent posts by Maurie Hill (who has Stargardts) on Zoomed In. These posts include reports of her inclusion in the ACT Stem Cell clinical trials.

VIBE – Visually Impaired and Blind Empowerment – A great new website, primarily about Stargardt’s, with sections on adaptive equipment and macular degeneration plus a blog.

Living with Stargardt’s Disease – Bhumika’s blog. I highly recommend a visit as her posts are very good indeed with useful tips as well as updates on research and her accounts of how Stargardt’s has affected her.

Living with and supporting Stargardt’s Disease – a blog by Kayley, who has Stargardts and is an artist and professional singer from Warrington in England. A useful post – Stargardt’s Groups and Pages on Facebook.

Zoomed In – the Ai Squared Blog.

Living with Stargardt’s – blog started September 2008 by Jen in Canada.

LVATUG blog – serving the North Carolina Triangle low vision community in USA.

See Through My Eyes – Stargardt’s Disease – posts by C.R. in Sydney, Australia.


NEW SECTION! YouTube
There are many video clips on YouTube about Stargardt’s Disease. I think this is a good one:
Living with Stargardt’s Disease


Inspiration
Diamond Panes – A meeting-place for blind visionaries and sighted seekers-in-darkness, posts by Leanne in South Africa who says “I hope you will take some time to consider my reflections and be inspired by them.”

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.”


Information
NEW LINK! Flor Braga wrote “I’m the president of Stargardt APNES, Stargardt Disease Patients and Parents Association from Argentina. We have a networking group with all Latinamerica’s patients associations. Here is the webiste: www.stargardt.com.ar

Stargardt macular degeneration on Genetic Home Reference – A service of the U.S. National Library of Medicine.

Self-Training in Eccentric Viewing – learning to use your peripheral vision when you have Stargardt’s.

AMDF – American Macular Degeneration Foundation have a page specifically about Stargardt’s.

Wikipedia now has a posting for Stargardts Disease.

RNIB in England provides information as well as contact addresses.

Foundation Fighting Blindness in USA and Foundation Fighting Blindness in Canada have 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.

Western Australian Retinitis Pigmentosa Foundation has a section on Stargardts.

MD Support – The Eyes of the Macular Degeneration People -
offers excellent support via information and e-mail support etc. Even includes some photos showing how MD affects our vision. Check out the section called The Stargardt Team where people of all ages have submitted details about their Stargardts.

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


Books
NEW LINK! “Glimpse: A Telling Tattle” by D.S. Sully – who wrote sayhing “As the author of “Glimpse”, I have chronicled my lifetime of living with Stargardts. As I tell my readers, it has taken me over 50 years of lifetime experiences to explain this challenging situation. One of the goals of Glimpse is to explain the adaptive nature of Stargard’ts. From my experiences, far too many people view vision loss as an all or nothing dilemma. They have a hard time comprehending that area between perfect acuity and total blindness. Even most of the supporting organizations tend to cater more so toward total blindness rather than partial vision. As such, I am often asked why I do not read braille or use a white cane. My answer has always been the same by noting that neither seems to apply well when I am mowing the lawn or riding a bike. Sometimes I tire from trying to explain what I can or cannot see. Over the years, I have learned to shrug that off and be content with thriving on the periphery, which I have done in six different career fields and though numerous adventures, the most recent of which has led to becoming a recognized visual artist.” Link to Google Books. Read Book Profile on Glimpse.

“Macular Degeneration” by Dr. Lylas G. Mogk, M.D.
“This is a great new book” wrote Tom Perski. You can buy it online via Amazon or Random House.


Access, Equipment and Employment
NEW LINK! eSight eyewear – On the website they say “eSight is the only intelligent eyewear that enables those with legal blindness to actually see”.

Blind drivers at the steering wheel – Interesting article on BBC News Magazine, 14 April, 2013

AppleVis – A community-powered website for blind and low-vision users of Apple’s range of Mac computers, the iPhone, iPad and iPod Touch.

SmartSightTM – Making the Most of Remaining Vision – good tips and tricks courtesy of American Academy of Ophthalmology.

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 have done so for MANY years. You can download a free 30 day trial version from their website!

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.

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