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• NEW NEED ADVICE
• Posted: 2008-01-10 12:52:14 By Carol C
• I am a 64 year old woman, and had a diagoses of dry mac for 3 years. I have a new retina doctor and after a yearly check, wants to do some testing, she said she doesn't think I have dry mac. She said that SD mimics dry mac. Does anyone else have this disease at my age?
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• New to the forum
• Posted: 2008-01-08 12:51:37 By Elizabeth M
• It just occured to me that after jumping in and repsonding to messages that I never introduced myself.
  My name is Liz. I am married with two boys, Jarred who is 10 and just diagnosed with SD, and Austin who is 7. We live in Oklahoma and spend the majority of our free time racing quads. When we are not racing our boys play baseball and wrestle, and Jarred plays football.
  Hope to get to know all of you and share helpful information together!
  Liz
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• Omega 3 Fish Oil
• Posted: 2008-01-05 18:10:55 By Angie P
• What is the recommended dose of Omega 3 Fish Oil for people with Stargardts?
  
  thanks
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• Any info would be of help
• Posted: 2008-01-02 01:56:06 By Christy P
• My son was dignosed in 2003, but i didnt find out what it was that he had until a few months ago. This year was the first they decided he needed transitional lens for the sensitivity to the light. He is already red/green color blind. So far he has progressed slowly, but from what i have read that can change. Is there anything i can do to help him prepare with school and such? I hear there is special books that they can give him with larger print etc... How would i go about doing that? Any help would be great.
  
  Thanks
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• Merry Christmas
• Posted: 2007-12-17 18:00:53 By Phyllis G
• Hi everyone, just a small note to wish you all a very Happy Christmas, and to thank everyone for being so helpfull and supportive to me this year. God bless you all in 2008. Phyl. Dublin Ireland.
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• stem cell hope
• Posted: 2007-12-11 10:32:08 By Janet S
• I was sent this via email,
  It is exciting.
  stem cells may regrow the retina,
  Now we just to figure out how to fix the underlying cause, so that they can do it.
  
  ...AMD. Retinal pigment epithelial (RPE) stem cells transplantation. "… patients were able to read, cycle and use a computer. By 2011, we will make it a 45-minute out patient operation."
  
  Posted on December 8th, 2007 by info@sujanani.com
  Could an out-patient surgical procedure for cure of age-related macular degeneration (AMD) with stem cells transfer become commonplace in the next decade?
  
  During a recent visit to discuss the possibility of conducting human trials of retinal stem cell transplants in India, Professor Pete Coffey, from University College London (UCL) Institute of Ophthalmology, London, United Kingdom; reportedly told the Times of India:
  “… some cases, the transplants were so successful that the patients were able to read, cycle and use a computer. By 2011, we will make it a 45-minute out patient operation.“
  
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• Update on treatments and cures
• Posted: 2007-12-07 12:42:10 By Mindy L
• Hi Everyone,
  
  This message is from Dr. Rando Allikmets - Columbia University - he was one of the original doctors who discovered the ABCR gene, which is responsible for Stargardts.
  
  We have been pushing the gene therapy project, but the expectations usually run way ahead of the reality. There was a discussion of a
  Phase I trial starting next year, but in my honest opinion it is still a little further down the road. In addition, the Phase I trials
  usually involve adults with very advanced disease, where the efficacy is not evaluated and/or even expected, and focus mainly on safety issues.
  
  There are other possible treatments being investigated, such as small molecule approaches limiting vitamin A uptake. Since these are much
  less invasive, they may be available faster. Tim Schoen should be abreast of all these developments; another person at FFB who definitely knows is Steve Rose.
  
  We are continuing our efforts and hope to get to a meaningful treatment soon.
  
  Warm regards,
  Rando
  
  
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• Thank all so much
• Posted: 2007-12-05 13:53:43 By carmen C
• I just wanted to say thank you very much for all the info and advice. you guys are wonderull thank you. he is still having a hard time with all of this but only time will tell what he will want to do with his lif. now that it is going in a hole nother direction.
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• Thank all so much
• Posted: 2007-12-05 13:53:39 By carmen C
• I just wanted to say thank you very much for all the info and advice. you guys are wonderull thank you. he is still having a hard time with all of this but only time will tell what he will want to do with his lif. now that it is going in a hole nother direction.
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• Fenetiride
• Posted: 2007-12-04 17:35:58 By IDA A
• Hello to all
  
  Have you heard about Fenetiride medication being tested in human for stargardt and macular degeneration (dry)?
  Where is this taking place? Who has some other information?
  
  thanks
  Ida Andrea
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• new to the website
• Posted: 2007-12-04 12:25:50 By megan w
• i have a 10 yr.old son who is going blind. he has stargarts. anyone with information or a similar issues, please contact me and we can share information..
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• star gene
• Posted: 2007-12-03 15:32:50 By hessie k
• hi ,
  i was just wondering if anyone in here knew
  anything about it.i was so excited to here about it they are starting a trail this year in NY i sent my blood work in and was told i had both the gene and the disorder well i already knew that lol they said they would get back to me
  and they did a few month later i was told i was to old i am forty now and i don't think i will get any younger but maybe it will help someone in here or maybe a family member i hope it dose we all deserve a break .
  god bless you all
  hessie
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• Anyone using a Mac?
• Posted: 2007-11-21 07:47:23 By Larry R
• I've been using a PC with Zoom Text for screen enlargement and sometimes TextAloud to read documents. I understand the mac has those functions are part of its OS. Is that correct? How well do they work?
  
  thanks
  
  Larry
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• driving
• Posted: 2007-11-19 21:46:34 By rebecca w
• hi there my name is rebecca i was diagnosised at 18 with stargardts but have had it since i was about 12 i am now 20 and about to graduate college in a year or so. i was wondering if anyone has ever gotten there drivers license and if so how they went about doing so. i really want to start researching how i can do so sucsessfully so if anyone has any suggestions please contact me at becca_rose_wilson@mac.com
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• Best PC Monitor
• Posted: 2007-11-19 20:07:42 By Casey C
• What PC Monitor do you all recommend for those with Stargardt's? I'm in front of a computer all day long and need a brighter and/or crisper monitor I believe. I don't think bigger will help. I just want to read faster! :)
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• new to site
• Posted: 2007-11-18 09:50:41 By hessie k
• i was just wondering if anyone ever went in to
  the chat room,if so when? please lrt me know.
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• jobs
• Posted: 2007-11-17 16:04:37 By carmen C
• hey I was wondering if any of you could give my brother some idas on what jobs he could do. He is 22 and was just told he cant drive and that hes loosing his eye sight and he lives in a small small town and thers no buses. would love the feed back.
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• First time
• Posted: 2007-11-13 16:50:04 By Elissa S
• Hi! I don't know why I've never done this before... I Was diagnosed with Stargardt's 10 years ago, when I was 19. I don't know anyone else with the disease. I wish I had other young adults that know exactly what I'm going through and the challenges you face losing your sight at such a young age. I graduated from college and worked for a few years with the help of RSB. Now I have a 2 year old and I want more than ever to be able to see clearly! Is this StarGen going to make my dream come true?
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• ECT
• Posted: 2007-11-09 12:19:58 By Georgette K
• I read about Encapsulated Cell Technology (ECT) being in phase II/III clinical trials, and Stargardt's is never listed as one of the diseases it would potentially treat. Does anyone know anything about this?
  
  Thanks,
  Georgette K.
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• help at school
• Posted: 2007-11-08 17:18:03 By Phyllis G
• I am asking for advice from anyone who may have had a similar situation. My son Conor is now in first year high school and doing very well. We had been offered a care assistant at the start of the year from the department of education. But having spoken to the principal they felt that it would draw too much attention to Conor in class and his grades were good - we got the computer and opti lenses which zooms in to the blackboard. Conor has to change class every 40 minutes. Which means carrying the equipment. All of the teachers except one forget about his problem and do not enlarge any printouts for him. I am a bit upset because I have now decided that we will have to get the help mainly to act as a backup for Conor. I just dont think its fair that he is being handed test papers in very small print and doing his best to read them. Then he is at an awkward age (13) and does not want to make a fuss. I have now asked for the help for next year but I am worried - the school said the help usually follow the kids around everywhere and draw a lot of attention, which is what we really want to avoid, we only want someone to get the info and enlarge it and give it to Conor for each class, and perhaps charge the laptop at lunch time. The visiting teacher says I must be very clear and insistant about what we want. Have I made the right decision. I feel so upset these last two days. Conor is doing so well now, but I am looking at how the volume of work will increase next year. Right now I suppose I am disappointed that the teachers have forgotten, I know they are busy. I think the problem with starguardts is that it is very hard for people to understand that reading standard print is so difficult . I'm sorry for going on but I know some of you who have children will understand, and as a mom I dont want my boy to feel different from his class mates. Phyl
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• new to site
• Posted: 2007-11-07 16:36:14 By lucinda b
• i was just told i have stargardts at 40 my eyesite
  is 20/200 r ,20/100 l can anyone tell me what to expect !
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• headaches
• Posted: 2007-11-07 16:27:51 By lucinda b
• hi,
  i was just wanting to know if any other's have trouble with bad headaches ? and what they have found helpful
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• New to site!
• Posted: 2007-11-01 22:29:57 By Jessica M
• Hey everyone! My name is Jessica, I am 27 and I was diagnosed with Stargardt's when I was 11. I am the only person in my family with this disease. I have a few questions to ask! I have read some about stargen, is it a cure or just a prevention to keep eye sight from getting worse? Why do some peoples eye sight stabelize at like 20/70 and others 20/400? Because that is a huge difference! I went to Johns Hopkins in 2003. The specialist told me he expected a cure within about 5-8 years. I hope to get a response from anyone! I just got on this site yesterday and I would like to find out as much info as I can. THANKS!!
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• Optomistic Future of Stem Cells
• Posted: 2007-10-31 15:06:47 By Kris W
• article out on the web today...
  http://money.cnn.com/2007/10/31/news/companies/stem_cells/
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• Size of Scotoma
• Posted: 2007-10-31 10:59:10 By Marie S
• Hello all - We went to the doctor yesterday with my 15 year old. Her vision remains fairly steady around 20/160, but when Dr. Sunness checked her with the SLO, it seemed like the blind spot had gotten bigger. Previously, she had some flecks around the spot, but it did not compromise her vision, but now it seems like she cannot see in that area. Is it typical for the blind spot to get bigger around for anyone on this board?
  
  Thanks.
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• Scientists Envision Growing Human Eyeballs
• Posted: 2007-10-25 14:43:36 By Eldie T
• http://www.livescience.com/health/071024-eye-switch.html
  ----------
  A genetic switch that gives tadpoles three eyes could allow stem-cell scientists to eventually grow human eyeballs or at least create replacement parts needed for repair jobs.
  
  If scientists could grow eyeballs from stem cells in the lab, the process would be a boon to individuals with damage to cells within the eye, including retinal disorders.
  
  "If you knew all the genes, and how to turn them on, that you needed to make an eye, you could start with very early embryonic cells and turn on all the right genes and grow an eye in a dish," said co-leader of the study Nicholas Dale, a neuroscientist at the University of Warwick in England.
  
  "What I think is the more realistic possibility is to make precursor cells for different bits of the eye, which could then be transplanted and differentiate in-situ to replace damage to the retina or the lens or iris," Dale told LiveScience.
  
  Scientists already had established the amphibian genes that initiate and direct eye development, which they refer to as Eye Field Transcription Factors (EFTFs). How these genes get activated in the right location at a certain time during development had been cloaked in mystery.
  
  The new study, detailed in the Oct. 25 issue of the journal Nature, suggests a nitrogen-bearing molecule sets off a series of steps that result in eye formation in frogs. The mechanism probably also applies to humans and other animals with eyes, the researchers say.
  
  Dale and University of Warwick developmental biologist Elizabeth Jones, along with colleagues, discovered the eye-switch while investigating how "ectoenzyme" molecules located on the external surface of cells contributed to the development of locomotion in the African clawed frog (Xenopus laevis). The biologists injected the molecules into frog embryos that comprised just eight cells.
  
  One of the ectoenzymes triggered wonky eye development. When added to cells that would eventually form the head, the resulting tadpole sported three eyes instead of two. An even stranger sight resulted when they injected the ectoenzyme into other developing body cells. The molecule caused an additional "ectopic" eye, leading to tadpoles with a spare peeper growing out of the side, abdomen or even along the tail.
  
  On a molecular level, the scientists say the enzyme converts a burst of the energy-carrying molecule ATP into ADP, which ultimately turns on the embryo's eye-making machinery.
  
  The researchers think the same mechanism for triggering eye development applies across a wide range of species, including us. Mutations to the human equivalent of this enzyme lead to severe head and eye defects in humans.
  ----------
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• can anyone relate?
• Posted: 2007-10-23 10:42:10 By suzie o
• i was diagnosed with stargardt's at age 11. at that time my vision was either 20/200 or 20/120. (i was told both by different specialists.) anyway, i could read regular print books and magazines with no aids, but i did have a pair of basic reading glasses that helped. of course i held everything close, and couldn't see the board at school, but a monocular helped with that. i could get around fine and do most "normal" activities without much trouble. doctors told me i was stable and my vision shouldn't get worse.
  i didn't notice much difference over the rest of school, with the exception that possibly sometime in college, i needed the reading glasses more to be able to read magazines and stuff.
  i had my first son at 24 and noticed a significant change after that. i had moved to a new state and new doctors, who told me i wasn't testing much different than i had been, but at that point i was somewhere in the 20/300's. i now cannot read regular print even with super thick special magnification glasses. i have to use a hand held magnifier of at least 12-14x in order to read anything, bills, recipes, directions on packages, letters, anything. i can't even read large print without the special glasses. i have trouble getting around more now, especially stairs, curbs, steps, etc. i think my depth perception is way off.
  i recently went back to a low vision center and now my vision is measuring at 20/400. I'm now told that it shouldn't get worse, but thats what they told me when it was about 20/200.
  i've noticed the blurry spots in the middle of my sight have gotten bigger and thicker it seems. i notice them getting in the way a lot more.
  i am 27 now, and a few weeks away from giving birth to my second child. i am getting worried that i could lose another significant amount of vision and things get even harder.
  it scares me becuz my vision has always been an obstacle, but nothing like it has become. i try to keep a positive attitude, but being a parent now is bringing up a lot more issues and concerns i am only starting to address.
  just wondering if anyone can relate to any of this. thanks.
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• portable cctv's
• Posted: 2007-10-23 10:15:31 By suzie o
• has anybody used any of the portable cctv's for reading or writing? any recommendations? i plan on using it both for reading, and for filling out forms, paying bills, that sort of thing. a full sized cctv is not really an option right now, but i've been trying to find out about the portable ones.
  any personal experiences would be the best help. thanks.
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• driving
• Posted: 2007-10-19 14:50:01 By T R
• Does anyone know if bio optic glasses are allowed in New York State? How bad does your vision have to be to need these? Thanks, Tonya
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• Unite for Sight
• Posted: 2007-10-16 01:04:45 By Chin S
• pls visit
  http://www.uniteforsight.org/
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