By admin (Admin) on Tuesday, October 10, 2000 - 08:45 am: Posted by Kris Ferguson on September 06, 2000 at 20:04:39: My daughter has Stargardt's (diagnosed at age 7, she is now 22) and we are registered with the Foundation Fighting Blindness which provides funding for research specifically for retinal degenerative diseases. Are you affiliated with the Foundation? We were involved in the first annual "People and Paws - Walk for a Cause" in June of this year in Newport Beach, California. It is very apparent that not many doctors even refer patients to your organization or the FFB. There is a great need to raise awareness in the MD word. Comments?

By Steve on Monday, November 27, 2000 - 03:54 pm:

I am interested in any information about adaptive optics, specifically the research being done by David R. Williams.

By lynette on Sunday, February 11, 2001 - 06:31 pm:

My daugther is seven years old and has been diagnosed with macular dygeneration. We relized there was a problem when my sister in-law ask if her eye had been checked. I have my our eyes checked regularly. After she had her eyes examined the doctor ask to speak to me in a room where the children could not hear. Since, we have been to one retinal spealist that did diagnose her; but, he said it could be stargart's disease or clone disease. She has an appointment March 27, 2001, to go to Sheie Eye Institute in Philadephia, Pennsylvania, to see a Dr. Samuel Jacobson, a retinal degeneration spealist. My question is what can we do to help her. When she reads she hold everything very close; I would not be able to read it if I held it that close. Magnifying devices have been brought up by her school nurse. She, my daugther, is aware there is a problem. We do know there is some obstruction in her vision from the first spealist we when to. I just wanted to get some feedback on this condition. Thank you for your time.

By Marilyn Cox on Monday, February 26, 2001 - 01:48 pm:

My daughter was no diagnosed with macular dengeration at 16, but she had trouble throughout school reading and we can not understand why. I would recommend that you begin teaching your daughter Braille. In addition contact the National Federation of the Blind. My daughter is now 24 years old has graduated from college and working on her Masters degree. This would have much simpler for her if she had learned Braille. My daughter was a scholarship winner for the National Federation of the Blind last year. Attending the NFB national convention was very encouraging for us.

By gene vetrino on Tuesday, May 22, 2001 - 03:03 pm:

Could you please sent me any information that you have concerning starqardt's. I would like to know if there is any medical procedure to follow or vitimans to take to help. Thank You

By admin (Admin) on Thursday, May 24, 2001 - 04:23 pm:

For information on Stargardt's, please follow this link on our Web Site: http://macular.org/stargardts.html

By Ralph on Wednesday, January 01, 2003 - 11:44 am:

I'm a 76 year old WW2 disabled Veteran declaired legally blind 2 1/2 years ago. I am 87% deaf and have walking problems. Had to give up all customary life activities. Now I sit and don't know what to do with all my time. Have no readily available transportation do not live in a city.
Have small house and cat. Would like to help others but can't figure out how.

By loret pheiffer on Friday, April 11, 2003 - 06:39 am:

I would like to know whether there are any vitamins to help with stargardts. My son is 11 and was just diagnosed with that, and my husband has the same.

By Alex Towers on Saturday, March 06, 2004 - 10:18 am:

Hi.....I live in England, I've Stargardt's since I was 6 and am now 17. I understand how hard it can be to cope with this disease so if anyone is ever in need of someone to talk to or advice, I am very happy to try and help.

By Anonymous on Tuesday, March 16, 2004 - 09:22 pm:

I am interested in finding if Stargardt's has other related diseases which would cause possible related disorders such as with muscle tone or cognitive ability.

By Jason on Wednesday, March 24, 2004 - 11:38 am:

I was diagnosed with Stargardt's at 12, I'm 19 now...I'm willing to try and help others with what ever I can...from all the Internet research I've found everything out there is pretty much just a variation of everyone else's information...and as for raising awareness of MD..I read on one site or another, can't remember where that there would probably be more research done on MD once the baby boomers get to that age...if anyone wants to talk or anything just let me know...like I said, I'm very willing to help

By ilker on Wednesday, June 02, 2004 - 05:47 pm:

Hello, my name is ilker. I heard that there is a clinic about Stargardt in Cuba. Does anyone have any idea about that. Thanks...

By Anonymous on Sunday, June 27, 2004 - 01:37 pm:

By Jason on Wednesday, March 24, 2004 - 11:38 am:
I was diagnosed with Stargardt's at 12, I'm 19 now...I'm willing to try and help others with what ever I can...from all the Internet research I've found everything out there is pretty much just a variation of everyone else's information...and as for raising awareness of MD..I read on one site or another, can't remember where that there would probably be more research done on MD once the baby boomers get to that age...if anyone wants to talk or anything just let me know...like I said, I'm very willing to help

Jason, I am interested in talking with you.

email me back. CSBodily@aol.com
Thanks, CB

By Sherry on Sunday, September 25, 2005 - 10:18 pm:

Hi, I was diagnosed when I was 20 yrs old and have lived with Stargardts. I have been living with this desease for more than 20 yrs. now. Do not let it get in your way. Can still go back to school and get a higher education. I have managed to work in the cleaning profession and now own my own business. Am currently in college for an associates degree in health information techmology and hope to graduate soon. If you have any questions or would like to talk email me at Hobbiessherry2@aol.com and put in subject line about Stargardts so I know to answer.

By John on Sunday, October 16, 2005 - 07:42 pm:

I am curious about Stargardts and when do you know if you need braille instruction? Is it wiser to spend the teenage years learning how to use other technology or what?
If I'm an A student and can read Harry Potter books why should I learn braille?

By alena on Wednesday, March 15, 2006 - 12:37 am:

i am in teenage too glad you ask i havent had to leatn braile yet and am one of the smartest students in my county thus with stargardt's. I have learn different ways and technology to do things .