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• Experiences Dr. NOLAN
• Posted: 2008-03-14 04:30:09 By Loran J
• My daughter Tess (11 years old) as SD.
  Sofar we donot find any treatment to cure or stop this desease.
  Can anyone advise us in any cure or treatment???
  
  Also we hear about Echo Therapy of Dr. Nolan.
  Has anyone experience in this?
  
  Hope to hear from you
  Loran from The Netherlands
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• NNRI's StarGen collaboration with Oxford-BioMedica
• Posted: 2008-03-13 10:46:48 By Kristine A
• Hello all,
  
  I would like to clear up some confusion about NNRI's StarGen collaboration with Oxford-BioMedica.
  
  The message that was posted earlier was not written or authorized by anyone on the NNRI-Oxford Joint Management Committee that has sole responsibility for the development of StarGen for Stargardt's disease. I assure you that not only are sufficient funds available at this stage of development, but the Joint Management Committee is pleased with the pace of the StarGen project.
  
  Here is a sampling of this year's accomplishments and aims:
  
  *Developing clinical protocol/held preliminary investigator meeting to define study
  
  *Proof of concept work peer reviewed and accepted for publication in leading Gene Therapy Journal
  
  *Appointed regulatory CRO to accelerate transition into the clinic
  
  *Aim to initiate regulatory interaction with FDA within the year
  
  *Manufacturing development for ocular applications ongoing
  
  *Pilot non-clinical study work in progress
  
  *Non-clinical safety package determined
  
  Again, NNRI, Oxford, and StarGen's investors remain committed to initializing clinical trials as soon as possible, and when we have any further updates, FFB's constituents will be the first to know.
  
  Best Regards,
  
  Dr. Steve Rose
  Chief Research Officer, FFB
  
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• Son 20/200 legally blind?
• Posted: 2008-03-12 01:32:23 By jacqueline r
• My 12yo was diagnosed 1 year ago. I've just become aware that 20/200 is legally blind and wanted to know how to facilitate his education. What about standardized testing? We live in california. Also, we saw a low vision specialist, so far he has tried hand held magnifiers without much success. What are other options?
  Jacqueline
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• FFB and Oxford Biomedica - Stargen
• Posted: 2008-03-11 17:45:21 By Deborah T
• I know that FFB is helping to fund research into Stargen in collaboration with Oxford Biomedica. Oxford have just issued their end of year reports, but it doesn't list any progression in the development of Stargen? Is there anyone who is watching this group who can give us any further info? It seems strange that there is no info on here about development etc, when it is a collaborative effort?
  
  It seemed so promising, but why has it suddenly come to a halt. Any info is better than no info at the moment.
  
  Oxford are doing really well with their Cancer fighting work, but why when so much money and effort has been put into Stargen have they just let it stick at this point. Surely if it is viable, it would be worth them taking it into trials, especially if they are being independently funded by FFB?
  
  Any comments anyone.
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• What can I expect?
• Posted: 2008-03-10 04:03:32 By Rebecca H
• My name is Rebecca, I'm turning 30 this month, and last year I was told I have Stargardts. I have to admit I haven't taken the news well. My diminishing eye sight started as a joke with friends. While playing Texas Hold 'Em I would often have to lean in to see the community cards or I wouldn't see the suits correctly. I went to the eye doctor thinking I just needed a better script, when I couldn't even see the giant E on projection on the wall I thought it was faulty equipment, except the look on the doctors face... 2 months later, and a long day at Mass Eye and Ear in Boston, I was told I have Stargardts, my sight will only get worse, and there is nothing I can do to prevent it or slow it. At least thats all I heard. Admitedly I haven't gone back because I don't want to know how fast is will happen, I already know it's going fast. What wasn't explained, what I want to know, is what will it be like when it is bad? I'm a single mother with two beautiful kids... My daughter is just turning 11 and my son is 8. Will I be able to see how beautiful my daugher looks on her wedding day? Or how handsome my son has grown up to be? I am already having trouble helping with homework, seeing it, how will I be able to be there for my kids when the work will only be getting harder? My son has learning disabilities and needs all the help he can get. My daughter can't understand why her mother panics in crowds because she can't recognize her own daugher from across the room. I'm lucky in that I have two great parents that I live with and rely on them for many things. Mostly to drive myself and my kids everywhere. I don't have a licence because I'm too scared to drive, while a passenger things are suddenly in front of the car and I would have hit them if I was driving. I'm too scared that it could be a person. What can I expect from this? I don't mean time lines, aids I can use, ect. I mean what can I expect to see (or lack there of)? Please, if someone could describe it to me I'd really be greatfull. Thank you
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• Race to Cure Blindness - Foundation Fighting Blindness
• Posted: 2008-02-29 09:22:49 By Kristine A
• Are you a marathon runner or competitive racer? You can use your racing effort to raise money for the Foundation Fighting Blindness through our Race to Cure Blindness program! To learn more visit www.RaceToCureBlindness.org.
  
  
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• Stargardt athletes have more fun
• Posted: 2008-02-29 08:51:48 By Larry R
• One thing for sure, athletes with SD get a lot of press attention. Just read about a Canadian cross country skier. And there was the marathoner, the bowler, the sharpshooter. Just kidding about the sharpshooter.
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• Ignorant people (at work)
• Posted: 2008-02-28 04:52:59 By Andy L
• Hi there, it's been awhile since I've posted.
  
  My name's Andy, I'm 26 years old, and have lived with decreased vision of 20/200 in both eyes since I was about 19, caused by stargardt's.
  
  Like pretty much everyone on here that has the disease, I've been through my fair share of trials and turmoil... coping with frustrations of all types.
  
  Despite having overcome and/or found ways around most obstacles caused by stargardt's, the ONE thing I seem to never be able to control is people's ignorance regarding my capabilities... specifically the ignorance of co-workers and bosses.
  
  Here has been my strategy lately when I apply and work at a new place (I'm in computer networking aka IT):
  
  1) Apply for and accept the job, without mentioning my vision problem. Despite many laws meant to 'protect' us, prospective employers will not hire us if they know in advance. (At least that's been my experience).
  2) If, after working a week, I realize I cannot do a job without some sort of accommodation, I'll try to provide my own. If that doesn't work, I'll let my employer know. At this point, I'm hired, so an employer firing me for asking for an accommodation would be risky for them.
  
  Here is the problem I've ran into tonight:
  
  It is clear I have a vision problem to my co-workers, only because I either sit very close to my computer screen, or use a screen magnifier with a larger-than-average PC monitor. However, I'm experienced, I do my job, and I do it VERY well.
  I expressed interest in a different position a couple months ago... it would be a promotion, and initially the department head was very enthusiastic. That was true, until a couple of his employees mentioned off-hand that I have "difficulty seeing the screen and maybe would make mistakes of a critical nature."
  
  ... I am a professional, and have been both a network administrator and network engineer in good standing with companies (on my resume) that have 200+ employees. All of those positions were held AFTER having my vision decreased by stargardt's. Words simply cannot express the frustration I feel here. I've worked nearly 7 years to overcome these sorts of things... I've worked my way up the IT ladder through hard work, education, and exceptional professional conduct.
  
  But my eyesight will likely forever be the thing that keeps me from being promoted within the same companies I start in.
  
  I'll end this letter of frustration with a brief conversation that took place this evening between myself and a guy working in the department I wished to move into:
  "That must be a braille clock on your desk."
  
  My response, "No it is a BINARY clock, meaning it displays on/off lights that tell the time based on binary math."
  
  "Well it looks like a braille clock to me."
  
  How typical for a guy who can do binary math (the guy who made the comment), to see a binary clock and comment that it must be braille.
  
  For the record, I do not and will hopefully never need to know braille.
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• How do I become a stem cell guinea pig?
• Posted: 2008-02-24 19:33:44 By J. H
• so ive been checking out these articles and seeing that allegedly progress for both gene and stem cell therapy is procedding to the human trial phase. anyone have a clue how i get in on this? ill take on for the team, so long as we can start seeing **** the way it was meant to be seen, with precision not found in my impressionistic [ainting of a world. haha, you know what i mean. any ideas on who to contact about that would be swell...
  j. hayes
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• Genetic Testing
• Posted: 2008-02-14 22:35:10 By Heather N
• My son (9yrs old) was recently diagnosed with Stargardts and the next step is to have genetic testing done. Any advice? What will it tell us? Should my 2 younger kids be tested? They are 7 years and 9 months. What about visiting a "specialist"? My Retina Dr. suggested we go see Dr. Ed Stone in Iowa. We live in Arizona. Has anyone seen him? Any recommendations? I'm just full of questions, huh? Thanks to everyone who responds to these messages, what would we do without each other?
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• Do I really have Stargardt Disease
• Posted: 2008-02-13 16:44:52 By fox m
• About 12 years ago, during a routine eye check up the doc told me that I had Stargardt Disease. I consulted other doctors also and all of them concurred. Honestly, at that point I thought it was the end of life as I knew it.
  As I understand, people suffering from this condition exhibit symptoms such as blurry or distorted vision, inability to see in low lighting, difficulty recognizing faces, and loss of color vision. I am 31 years old now, and In complete contrast, I have little problems in doing the following:
  1. Driving, though slightly difficult at night, especially when there are no street lights
  2. Read printed material placed no more than six inches away
  3. Use computers at home and at work: An average 7-8 hours every day over the last 10 years. Of course, I need to adjust font sizes or use the Windows Magnifier app.
  4. Distinguish colors from one another
  I used to wear glasses long ago but stopped because they weren’t helping me read.
  Would really appreciate your thoughts.
  
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• Just Checking in
• Posted: 2008-02-11 22:02:48 By Linda S
• Hello all! Just wanted to say hello and to see how everyone is doing. We are in the process with my daughter of getting all of the low vision evaluations and all that entails. We have to go to one that is here close to where we live (about 10 miles) The other one is 200 miles away, and we also have to go to have her evaluated to see if advanced technology will help. (That trip is also about 200 miles) The Federation for the blind in our state has been very helpful with all of this but it still seems overwhelming and somewhat confusing. It almost seems like they are being a little pushy about it. (if that is the right word) Sign this, sign that, we will do this for her, do that) I am grateful, but just a little confused. Anyway, just feels good to vent for a few seconds! I would love to hear from anyone that has the time to chat!
  Thanks again for all of the support from this message board
  
  Linda
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• From 20/200 to 20/100 in a year.
• Posted: 2008-02-11 10:35:26 By Eldie T
• I'm sure that title will provoke plenty of clicks. I want to say this isn't a cure or treatment, my vision most likely hasn't actually improved. What this is is how to get your best vision for things like driving tests, or other evaluations.
  
  In December of 2006 I was evaluated for bioptic driving as well as general low vision aides. Over the course of a month I had my vision evaluated by a general ophthalmologist, a low vision aide specialist, and someone involved in the bioptic driving progam. Every time my vision was 20/200+ (and 20/40 with the bioptic lens). I received a certificate of blindness (legally blind).
  
  Last week i had to go back for a yearly evaluation to make sure my vision hasn't degraded further (part of the bioptic driving program). At that time i tested at 20/100 in one eye, 20/125 in the other and 20/30 with the bioptic lens.
  
  There were a few short term things I did to prepare for the test.
  
  1. I took the day off. (or at least didn't work till after the appointment). I spend my work days staring at a computer screen, but even if you don't, you most likely spend your day straining to see something most others can see with ease. Use a personal day, skip school, save your eyse for the test.
  
  2. Get plenty of sleep. Most of these short term suggestions are about avoiding fatigue, and most importantly eye fatigue. My appointment was at 3:00, I slept in till 11:00.
  
  3. Avoid bright lights; the sun, TVs, computer screens. Again its about saving your eyes for the test/evaluation. I also drove to the test an hour early and sat in my car with my eyes shut for that hour. Dark is your friend.
  
  4. Eat a good meal before the appointment and drink caffeine. The meal will give you energy, and caffeine will do 2 things it'll dilate your blood vessels, and give you a boost. Drink a pop or coffee within a half hour of the apt.
  
  5. drink plenty of water. You are more likely to be dehydrated than over hydrated and dehydration accelerates fatigue.
  
  
  Most of my improvement probably came from those short term actions, but since September I took steps to being in better general health. Diet and exercise are always a good thing. It may or may not have helped my vision. If you'd like me to list my long term changes I'd be happy to.
  
  Hope this helps.
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• Accessibility (low vision) forum?
• Posted: 2008-02-07 09:24:29 By Larry R
• Hi, does anyone know of an accessibility or low vision forum where people discuss accessibility aids?
  
  thanks
  
  
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• Hello Everyone
• Posted: 2008-02-06 18:17:36 By VICKE D
• I've read through alot of the messages on this board and find many stories to be so much like mine. At the end of November I noticed that I had a small distoration in the corner of vision in my left eye. Figured that I turned 40 and next step was glasses, just "getting older". After a trip to an eye doctor she shocked me by saying that I had an eye disease and wasn't even sure what it was and sent me to a retinal specialist who later diagnosed me with Stargardts. I've been putting off internet stories I guess if I didn't think about it, there wasn't a problem. A month and a half later the problem is worse and today I had a treatment using Visudyne a photosensitizing drug to stop the leakage around my retina. I have to stay out of the sun and bright lights for 3 days so if anyone is out there I have nothing but time to talk.
  
  Love to hear from anyone
  
  Victoria(cajun girl)
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• Trying to reach Michelle G
• Posted: 2008-02-06 11:18:19 By Kimberly M
• Michelle,
  
  I can't find your e mail address, but I think you still have mine. It is Kim in Akron, Ohio. Can you send me a e mail? It is time to renew the drivers license.
  
  Kim
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• light bulbs w/o blue light
• Posted: 2008-02-04 16:55:13 By Karen B
• i know artificial light is bad for us and we should be avoiding blue light as well.
  
  anyone use a bulb they like? w/o blue light?
  
  i find that most bulbs even at a low wattage are so bright they hurt my eyes.
  
  thanks-k
  
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• Flashing and Pain
• Posted: 2008-02-02 05:06:45 By Marie B
• My boyfriend was diagnosed as a teenager and is in his early thirties now. His eyesight has degenerated to a point of constant flashing, eyes open or closed, and ceaseless migraines.
  He has all the fancy gadgets described on these forums to deal with low vision ... but does anyone else with this disease endure the constant distraction and disruption of flashing light across the span of vision, or constant piercing headache??
  
  I see no mention of pain, and only a little of flashing light or tv static-like vision blur. We just want to know how others with SD deal with this!
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• Hello all
• Posted: 2008-02-02 00:16:42 By Linda S
• Hey there everyone! Just need to write tonight and say that we are having some problems in our family with my daughter that has SD. She is 20 years old
  The problem is that my family is in denial, they have basically ignored her since her diagnosis of her disease (in december)Before that,they asked about her all the time and what was going on in her life, and I'm sure it is because they don't quite know what to say, but it is not making things any better. My mother (her Grandma) has not even called her since her diagnosis She lives 2 states away from us. and she has noticed that her grandma has been ignoring her. Sarah has called her, but with no response. I feel worse now than I did when she was diagnosed, but my daughter does not need this right now, she needs her family to be supportive, that has not been the case. My question is..... Has anyone else on this blog been through the same thing and how do you deal with family that is either scared, or just choses to turn away when somethig else goes wrong!? Or like I said, in DENIAL!? I would love to hear from you if you have a minute!
  Thanks
  Linda
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• Anyone in criminal justice?
• Posted: 2008-02-01 15:15:51 By Kris W
• Does anyone work in criminal justice? I have obtained my BA in CJ and just applied for an Associate Probation Officer job, things are looking pretty good right now and hopefully in a couple weeks I'll know if I got the job or not! :)
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• Stem cell trials
• Posted: 2008-02-01 13:03:34 By Larry R
• 
  
  Advanced Cell Technology, Inc. (ACTC) has completed discussions with the FDA regarding its retinal pigmented epithelial (RPE) cell therapy through a type B, pre-Investigational New Drug (pre-IND) meeting concerning the regulatory pathway and requirements to file an IND to initiate human clinical trials. The Company is working with the agency to fulfill the FDA's requirements to bring its RPE cell therapy into human clinical trials for the treatment of retinal degenerative diseases such as Retinitis Pigmentosa, Stargardt's disease, and dry age-related macular degeneration (AMD).
  
  The RPE cells are derived from human embryonic stem cells created from ACTC single blastomere cell lines under GMP compliant conditions. ACTC is moving forward with its characterized RPE manufacturing process to complete the final stages of the Company's preclinical testing. Should ACTC successfully file an IND for its RPE therapy, the Company plans to move forward with Phase I human clinical trials. ACTC's Myoblast therapy, an autologous adult stem cell therapy for the treatment of heart failure, has already successfully completed Phase I human clinical trials and is moving into Phase II human clinical trials shortly
  
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• Employment Opportunities at Envision
• Posted: 2008-02-01 11:42:37 By Mark B
• JOB OPPORTUNITIES AT ENVISION!
  
  If you are legally blind and looking for work, or know someone who is, consider Envision. Envision is a not-for-profit agency based in Wichita, KS. Envision has jobs in Kansas as well as at our military base stores in nine states. Job opportunities include administration, retail, and manufacturing. At Envision you will earn competitive pay, enjoy a generous benefits plan, and can be provided relocation assistance.
  
  Envision Wichita has immediate job openings for the following:
  
  Box Maker - Kansas City
  Machine Operator - Kansas City, KS
  Machine Operator - Pittsburg, KS
  Palletizer
  Picker - Kansas City, KS
  Picker - Wichita
  Sales Marketing Manager for Envision Xpress stores
  T-Shirt Bag Machine Operator
  Zip Lock Bag Machine Operator
  
  To learn more about these and other positions, please check our website at: www.envisionus.com or call Mark Benson toll-free at: 1-888-425-7072. All positions are open until filled.
  
  Envision is at EOE employer
  Envision: Choices and resources for people who are blind or low vision.
  
  Envision is a not-for-profit company dedicated to assisting persons who are legally or totally blind, with living a more independent life style. Envision has GREAT benefits and upward mobility potential. It is a growing company that is always looking for qualified Visually Impaired and Blind workers that are looking to be a part of a TEAM.
  
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• Not Stargardts
• Posted: 2008-01-31 15:45:18 By Jill W
• Help! Has anyone heard of Batten Disease and its relation to Stargarts?? My son was diagnosed last year with Stargartds and they are now looking at the much more rare disease Batten. We are waiting for the DNA results to come back and I can't seem to sleep or think or anything right now.
  Any information would be greatly appreciated!
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• SD and Social Security Income
• Posted: 2008-01-30 07:57:46 By Linda S
• Hello again all! My daughter was recently diagnosed with SD and The New Mexico Association for the Blind says that she must apply for SSI income as part of their "plan" to help her with funding. She is a full time college student (age 20) and works part time right now as her vision in both eyes is about 20/50. She is still able to drive but is in the active stage of the disease according to her doctor, and her vision is getting worse pretty rapidly.
  My question is... has anyone else applied for SSI and if so, did you receive it. I really don't think at this time she needs is as she is still living at home and plans to for the next 2 years until she graduates from college. Financially, she is able to pay her bills and still save money but I have heard it can take up to 2 years to even qualify for SSI. When you get a minute, please let me know any info on this subject. I'm sure everyones situation is different, but it would be nice to hear from others. Thanks so much!
  
  Sarah's mom
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• ScyFIX
• Posted: 2008-01-29 09:57:09 By Greg M
• Has anyone heard of the Minnesota company ScyFIX? They make some pretty big claims.
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• Echo Theraphy ?
• Posted: 2008-01-28 18:05:06 By Kelly S
• I have read the previous postings on this topic and there are certainly different views as to whether it is an effective form of treatment. Is anyone currently being treated with Echo Theraphy? if so how would you rate the benefits if any?, what is the cost? , and is Dr, Nolan still the only Dr. offering that ttreatment?
  
  Thanks.
  Kelly S.
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• Echo Therapy
• Posted: 2008-01-28 16:31:00 By Valeria R
• Hello everyone!
  
  I am new to this message board, I have been reading a lot of the messages posted so before I start I wanted to say thank you and good luck to everyone! It feels better to know that people here are helping each other with suggestions,personal experiences and nice words. I am a 24 years old student from Europe currently living in the USA (New York City) where I met my boyfriend 3 years ago. He is 28 years old and he's affected with Stargardt. It's very hard for him to talk about it but I would like his life to be easier since he has low vision. I contacted Prof. Lewis in Houston because I read that he is doing researches and he personally replied telling me to visit Dr. Chang at Columbia so we will see him soon. But I also read about the Echo Therapy, which seems to be working in a lot of cases! So I thought why not ... Let's try! I called the office of Dr. Nolan and I was very happy because they told me that they accept Medicaid. So before making an appointment I checked the train schedule, bus schedule,etc. Then I called again but bad news .... I didn't specify that the insurance (Medicaid) that my boyfriend has is in NY state so they just accept Medicaid Connecticut :-( . I asked how much we needed to see the doctor and I have been told 1500 for the first 2 visits. I just made a few phone calls because there must be a way through some organization (like Foundation Blindness) to get the chance to see the doctor without paying that enourmous amount of money ... I have to call back since it's kinda late already and the very nice lady that answered my call at Foundation Blindness told me to call back tomorrow. I feel very discouraged now. I mean, how is it possible for a 28 years old with low income to pay such a price? What about everybody else? We are lucky enough that the office is in Connecticut and we are in NY ... What about people from other states and other countries that besides paying the doctor also have to pay a lot for plane ticket, accomodation,etc.? Why is this possible? I will call back tomorrow to understand if there is some hope but I just don't get it. Did some of you get the help of some association or something? Thanks for reading .....
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• 10 yr old son with Stargardt's
• Posted: 2008-01-27 23:57:43 By PAUL P
• Our beautiful, little man Jack was recently diagnosed with Stardardt's @ New Enland Eye Center in Boston, MA. We've been struggling with all that comes with this life changing news. Jack is an optomistic child by nature but he is feeling somewhat alone/isolated with this disease. At his request we are looking for another boy his age for him to chat with. Ideally, he would like to find someone who also "has this large spot in the middle of his eye" that he has to try to "see around". If you know a fairly active 10 year old that would be willing to share some of their feelings about the obsticles/challanges they face please respond. We live in Eastern Massachusetts. Thanks Paul
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• frustrated
• Posted: 2008-01-26 22:24:51 By Elizabeth M
• i am 16 and found out i had Stargardt's when i was 8 and now have 20/200. I am frustrated wuth my disease. i want to go to collage. i am seeing a vision teacher at school but not helping i want to know what some people did when they wanted to go to college, how did u over come ur obsticals? please help.
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• acceptance
• Posted: 2008-01-24 17:14:51 By Katie B
• Hello, I am new to this and this is my first time I am reaching out to anyone that has the same condition or has a family member with the same condition. About five years ago I was diagnosed with Stargardts Disease. I am now 25 years old with 20/200 (legaly blind)in my right eye and I think 20/40 in the left eye and I have been slowing figuring out what everyday things are becoming more and more difficult. It is frustrating, scary and I feel hopeless. I use to work for an insurance company doing data entry and staring at a computer all day and coming home with a headaches. Now I am a house wife and want to work. I have a empty feeling inside that I have failed myself and my parents. I have a very understanding husband and he is very helpful sometimes too helpful but its my mother that is still in denial. I am not sure what I can do. I cant drive at night anymore. I just feel like I have gotten a door closed and locked.
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