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- LMI
- Posted: 2009-06-19 21:21:52 By Angie P
- Has anyone heard about Lipshitz Macular Implants?
- View Full Thread
- Stem Cell Clinical Trials
- Posted: 2009-06-18 16:31:13 By Georgette K
- Hi Everyone,
I've recently received several google alerts regarding promising news from the Casey Eye Institute. It appears that they plan to file a request within the next 3 to 4 months, to conduct human clinical trails using their Advanced Cell Technology. The long term research done on rats and mice have proved to be safe and effective for Stargardt's and macular degeneration. It's encouraging to see so many different approaches being pursued to find a treatment for eye diseases.
Georgette K. - View Full Thread
- Posted: 2009-06-16 12:59:19 By Rebecca A
- Hi Robin,
I am 21 and would be happy to talk with your daughter if she is till interested. I have stargardts and was diagnosed at a young age.
My e-mail is arrorm27@uwgb.edu.
Please feel free to contact me.
Thanks,
Rebecca - View Full Thread
- Seeing Clearly Without Eyes
- Posted: 2009-05-18 06:02:02 By Sean M
- Hello, my name is Sean McElroy. I'm a 23-year-old college student with Stargardt's who's out of work and has nothing but time on his hands for the summer. So I've decided to write a book, entitled "Seeing Clearly through Blind Eyes. It will be a collaborative work of stgories of kids and teens with Stargardt's, Best's and other visual impairments and how they overcame those obstacles to acheive something that no one believed they could do. I want to know your stories, not your kids', not your siblings, I want to hear it from them, from their perspective, because I want the world to know how WE feel, not how the world feels about us. Everyone who submits will recieve a contributing author's credit, and all money raised from the sale of the book will be donated back to the FFB. Please send YOUR submissions to me at mcelroy.sean@yahoo.com.
Thanks,
Sean R. McElroy
Arvada, CO - View Full Thread
- Looking for an e-pal
- Posted: 2009-05-13 14:37:10 By Tanice A
- Hello!
I am a teacher of a 9yr old boy with Stargardt's in grade 4. He is feeling pretty isolated and I would love for him to be able to talk to someone his own age with the same condition.
Is there anyone out there with a child who might like to be an e-pal with him?
Email me at: tanicea@hotmail.com
Thank you!! - View Full Thread
- brighness when eyes are closed and other symptoms
- Posted: 2009-05-07 14:45:45 By Suzanne O
- i've noticed, for a while now, that when i close my eyes in a dark room, that there is a brightness, for lack of a better word, behind my eyes that at times almost hurts. does anyone else experience anything similar?
any time i close my eyes i see bright almost flourescent looking lights.
when my eyes are open, there are these little "white spots" almost like little dancing lights. sometimes they look closer to neon colors at the edges. anyone else?
and i've noticed more and more lately that ill be waling along on what appears to be a clear floor, and then right as i am about to trip over it, an object seems to "appear" from nowhere right in my path. the object is definiely there, but i was "seeing" a clear floor where it was. also, i will sometimes knock over a glass that i could have sworn wasn't there becuz i swear i was looking at an empty spot on the table.
has anyone experienced anything similar? - View Full Thread
- city versus suburbs?
- Posted: 2009-05-07 14:40:51 By Suzanne O
- i'm just curious where those of you who are adults affected with SD live?
i grew up in southern california, where i always had to get a ride, so i moved to NYC for college at 18 and the ability to get around independently was great. upon graduating, (shortly after 9-11) city life got to me and i wanted something calmer, and to hopefully start a family.
i have lived in huntsville, al for the last almost 7 years. i am married with 2 young kids. where i live public transit is not even an option. i am very isolated and rarely leave the house, other than to get groceries with the family, and occasionally an evening out with my husband.
my vision has deteriouated a LOT since i had kids/gotten older -- not sure which had the biggest effect. i am not quite 29, yet was diagnosd, already with 20/200 at age 11. docs said it was stable at that, but is now worse than 20/400, and more importantly have noticed the loss of the central stuff tremendously. there is constantly "white spots" in the way. but thats a topic for another day.
i am going back to school in the fall to get a hopefully more useful degree. this time around i want to be an accountant.
i'm generally unhappy and think my vision, or lack thereof, is a much larger caudr than i was ever willing to admit. not being able to get around on my own, and not working, has made it almost entirely impossbile to make friends. my family, other than my dad, all live in california still.
i'm thinking that i want to look for work and relocate to a bigger city with public transit when i get my degree and am ready to find a job. my husband doesnt really understand this.
if anyone would be willing to share where they live, or how they manage to get around, i would really appreciate it. my email address is suziekewxo@yahoo.com id that makes it any easier.
thanks,
suzie - View Full Thread
- Sking
- Posted: 2009-04-08 18:33:30 By Phyllis G
- Hi everyone, I have not been on for a while but thought I would let you know that my son is doing well, he started sking last year, and this year made it to the black slopes winning a bronze medal. He loves it and Stargardts does not seem to bother him at all when he is sking. We have a great pair of goggles and a good helmet. I was so worried when we first found out but so far he just keeps surprising us, and more importantly he is having fun. Phyl
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- Magnifier Mouse for Low Vision
- Posted: 2009-03-12 23:16:10 By Mike C
- Hello, I am 26 years old and was diagnosed with Stargardt's Disease when I was 7 years old. I live a normal life and have a career as a Multimedia Developer at a college in Calgary, Alberta, Canada.
I work on the computer all day, and spend a lot of time on the computer in my spare time, and I have found a mouse that has made everything soo much easier for me. There is a whole line of Microsoft mice that use a software driver called Intelipoint. Any of the Microsoft mice that have the magnify feature listed on the features will use this. There is a small button on the side of the mouse that you can click to instantly bring up a re-sizable and adjustable on-screen magnifier.
I just wanted to share it with everyone else who has low vision since it has been a life saver for me. I find that I am able to work on the computer for much longer and read vast amounts of text without straining my eyes or being 2 inches away from the screen.
I have just posted a video on YouTube demonstrating how it works.
http://www.youtube.com/watch?v=eVCUWcMV8FI
I hope that helps some people.
Thanks - View Full Thread
- Congratulations to Scott MacIntyre!
- Posted: 2009-03-05 11:51:25 By Kristine A
- Congratulations to Scott MacIntyre! His dynamic performance on Tuesday night secured him a place in the Top 12 in American Idol!
Thank you to everyone who voted for Scott. Be sure to tune in again next Tuesday at 8:00 p.m. EST and cast your vote for Scott as he performs in the next round. With FFB’s support, Scott MacIntyre is destined to be the next American Idol!
Millions dream of making it to the final rounds of American Idol but for Scott MacIntyre, the dream has become reality. Born with severe vision loss from Leber congenital amaurosis (LCA), Scott is an incredibly gifted musical performer who has made it to the Top 12 on American Idol. With his remarkable talent, Scott is bound to make it far in the competition, and we need you to support him as he shoots his way to the top!
An Arizona State University graduate, a Marshall scholar, and a Fulbright scholar, Scott learned to play the piano at the age of three. His piano professor, Walter Cosand, said, "He's always been able to do what everyone else could do and many things no one else could do. A lot of things he does are very remarkable, even for someone without a disability."
Scott also has a sister, Katelyn, who has lost her vision to LCA. With their brother Todd, the three siblings have made a splash performing as the MacIntyre Family Singers. Scott even shared his talents with the FFB family when he performed at the opening luncheon of the 1998 VISIONS Conference in Chicago.
Simon, Paula, Randy and Kara have brought him this far; now it’s up to us to make Scott MacIntyre the next American Idol! Scott will be performing live on Tuesday, March 10, as one of the Top 12 contestants to continue to compete. Voting is free, so be sure to vote for Scott!
Stay tuned to the Foundation Fighting Blindness Web site for more information about Scott’s progress and how your votes can help him reach the top and raise awareness of retinal degenerative diseases across the country. - View Full Thread
- My son is recently diagnosed with Stargardt's disease
- Posted: 2009-03-04 14:32:04 By Sue Y
- We are just inform my son has Stargardt's disease last month. We are very worry how fast his vision would deteriorate. Will the progression become stable at some point? his corrected vision is 20/140 now. We are very concern how this is going to impact him and his career later in life. He is only 14 years old. Is the a special diet or special filter eyeglasses that can slow down the progression of the disease? Should he take Lutein and avoid Vitamin A rich food in his diet?
Please reply
Sincerely,
Sue from Canada - View Full Thread
- My son is recently diagnosed with Stargardt's disease
- Posted: 2009-03-04 13:29:46 By Sue Y
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- Newly Diagnosed
- Posted: 2009-03-04 00:36:15 By Robbin M
- My 20 Year old daughter was just diagnosed with Stargardt's. My 21 year old son was diagnosed 9 years ago. We just knew she had escaped this disease. I need to find some people her age or older to encourage her. Her brother is great support but she feels he's just telling her things so she wont fall apart. She needs some friends that have this to communicate with.
robbinfaith - View Full Thread
- Amazon Kindle 2
- Posted: 2009-02-11 15:00:33 By RICK C
- Did anyone hear that the new Amazon Kindle 2 wireless reading device will now come witha read to me feature which will read blogs, newspapers, magazines and books to you aloud. Great stuff!!
God Bless!
RIck C - View Full Thread
- IOL-VIP system
- Posted: 2009-02-10 18:10:32 By Edgar d
- Hi,
I found a new treatment on the internet and i wonder if sombody know about it and if it is efecttive.
You can find this treatment in www.iolvip.co.uk - View Full Thread
- catching up/checking in
- Posted: 2009-02-03 15:25:50 By michelle g
- Hey all. Haven't been on here in so long I had to re-register.
I saw a couple posts on the StarGen. good news. any other news? - View Full Thread
- Message board question
- Posted: 2009-01-23 00:18:40 By Brian C
- Does anyone know how these message boards work? When somebody responds to a posting, does it go directly to who your responding to? Or does it get published for everyone to see?
Thanks - View Full Thread
- Vision aid suggestion
- Posted: 2009-01-22 17:42:56 By tim b
- Hi, I need help. My daughter who was recently diagnosed with startgardts can no longer see reds. Unfortunately the software she uses at work has a lot of red in it as far as characters and such so she can not see what is writen or typed on the screen. Is there any low vision aid that she can use to change the color of the fonts so she can resd it other then asking the system admin. to change it? thanks
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- It's been a while...
- Posted: 2009-01-15 11:41:00 By Richie S
- It has been a long time since I have posted anything (years). I was diagnosed with SD at age 17 after driving for a year or so. I am 39 now. It was hard to give up driving, but I take the city bus now to work, along with my bicycle. I also get rides from friends and family (and I do a lot of walking).
My eyesight started going bad to worse the middle of my junior year in high school. I finished high school and then finished college (the 5 year plan). I live in Austin, Texas. I work for the school district doing computer support and programming. I use ZoomText to enlarge my computer screen. I also use a CCTV to enlarge printed materials. I also have an 8X handheld round magnifier fo on the go.
I go through the same things as what other users post. I cannot see details, but can get around fine. People don’t get it. I look like I can see fine, and I don’t wear glasses. They wonder why I need help with restaurant menus or airport signs, or other things like that. I usually say I forgot my glasses because that is the easiest quickest least painful excuse.
Anyway, I have years of experience and would gladly share my stories or answer questions for those who need some support. You can email me at jerryrsanders@yahoo.com. If anyone lives in Austin, I’d love to meet someone else with Stargardt’s Disease.
Richie Sanders - View Full Thread
- newly diagnosed
- Posted: 2009-01-07 00:46:41 By tim b
- Hi,
My daughter is 26 and just diagnosed with stargarts. She is finishing college with a degree in nursing and wants to do pediactric intensive care. Her vison corrected is 20/200 both eyes. Natually she is devistated and feels she can no long pursue her dream of being a PICU nurse. I have many question but as this is what seems to bother her the most I was hoping that if anyone here was or knows any nurses with SD that they may be able to share some stories with me and/or visual aid to help my daughter achieve her goals.
Ok next I need suggestions for eye protection. Any particular sunglasses I have read they should be 100% UVA and UVB plus that they shuch be blue blockers. As a young women she is naturally concerned with fashion are there any recommendations?
Vitiams I saw in one post Maxi Vision Occular was mantioned as a supplement are thier any other recommendations?
Microcurrent stimulation, I have seen this advertised does anyone have any knowlege of this?
Thank you very much. - View Full Thread
- Magnifier Recommendations?
- Posted: 2008-12-05 12:02:09 By Matthew W
- I'm 28 and my right eye is 20/200 right now and my left will probably be there soon (still have a small spot where I can see 20/20ish) so I've been starting to look into magnifiers.
Does anyone have any recommendations for distance monoculars or TV glasses or close up glasses.
Thanks in advance for any help. - View Full Thread
- STARGEN GENES THERAPY WILL BEGIN IN 2009.
- Posted: 2008-11-28 05:09:01 By Muhammad A
- Dear All.
Encouraging news received from the Foundation Fighting Blindness details are as under:-
We are actually hoping to begin clinical trials for Stargardt sometime next year. The email you received from Oxford BioMedica says that they hope to move toward clinical studies over the next 2 years. That doesn't mean it will take another 2 years. It's just a cushion because no one can make the prediction of when clinical trials will start. The Foundation is hopeful that it will be before then.
Please continue to visit our website to enjoy all that it offers.
Best Regards.
- View Full Thread
- STARGEN GENES THERAPY WILL TAKE ANOTHER 2 YEARS.
- Posted: 2008-11-17 06:34:32 By Muhammad A
- Dear All.
I wanted to share information received from Oxford Biomedica as under :-
Quote:-
Dear Muhammed
Thank you for your email enquiry
We remain committed to working with the FFB on the StarGen programme and are currently in the research phase of the project to generate the necessary proof of principle and safety information to allow us to progress this into a first clinical trial safely. The data so far are encouraging and we hope to move toward clinical studies over the next 2 years. There are currently no clinical studies open currently, however please monitor the FFB website for further information.
Oxford BioMedica
- View Full Thread
- How to ask for help...?
- Posted: 2008-11-16 05:02:10 By Andrew L
- I'm 27yo, have experienced stargardt's for 10, and there are times when I need some help doing things. Most often, I'm a very independent person... but occasionally I forget my monocular (for distance reading), or it is not feasible to use it, or the lighting is too dim or the daylight (in phoenix az) is too bright.
So, what is the best way to convey to someone I do not know that I need some sort of assistance... for example, to ask an employee at 'McDonalds' to let me know what's on their dollar menu, or to ask the customer service at an airport to help me locate my gate / baggage claim?
The problem: Like most people with Stargardt's, I can see. In fact, unless someone sees me staring an inch or two from a book or PC screen, in public few people would know I have difficulties. Even then, they seem to think I just need new glasses... or LASIK *sighs* (my personal pet-peeve).
Examples of requests I've tried, after the initial 'hi':
1) "I have trouble seeing and reading the signs here, and I need some help finding ''??''. Can you please show me where to go?"
2) "I am legally blind, with my glasses on (because some people don't know the difference), and I was wondering if you could read what you have on your menu in the way of chicken."
Sometimes (rarely), I encounter people that help without hesitation or grilling... othertimes, I'm not so lucky. I think I need more advice on how to ask for certain things occasionally.
To entertain you all though, here's why I'm posting this... a story of what happened to me flying from Portland, OR, to Phoenix, AZ:
PORTLAND AIRPORT
I walked into the airport, that I've been to 1 time before, incoming, on a different airline. I did not find the ticket counters for Alaska Air, so I asked an airport CSR (customer service rep) where I could find Alaska Air. He pointed of in a general direction to me left and said "Over there."
"Is there any chance I can talk you into showing me?", I asked.
He walked over to the first line for Alaska Air and said, "This line here." Cool, I thought...
While waiting awhile, I had not seen the small print under the main heading that said "First Class counter." The gentleman at the first class counter pointed out i was in the wrong line and needed to move down 6 counters, to the back of another long line. When I finally reached the counter, I was told by the Alaska CSR that this was the "E-ticket" counter and I needed to go down one more row, to the full-service counter.
After another wait, a lady working this counter finally helped me, however... she told me my gate was 'C4', and I asked if there was someone available who could show me to that gate, as I was unfamiliar with the airport and had trouble seeing signs.
She said, "Did you know your hair is blue?" (which I had done the day before).
"Yes", I responded.
"Well than obviously you can see." If I had been ANYWHERE other than an AIRPORT I would have had words with her.
As it went, I told her that was rude, and I was tiring quickly of the rude people in her airport, and that I'd appreciate some assistance, which I received in the way of a very nice younger (maybe 20) lady.
Now, somewhere along the line, the flight attendants at my gate, C4, got wind that I had a vision impairment (I was shocked someone had bothered to tell them, by this point). However, I was completely embarrassed when they called my name, and told me they wanted to pre-board me. (I'm not THAT blind).
"Grab my elbow and I'll walk you down to the plane," the nice flight attendant asked. "Um..., thank you but I can make it I think." I was trying to be polite, because obviously she was trying very hard to be very courteous.
When I got on the plane, another flight attendant tried to help me find my row (which I could have done), and then proceeded to tell me where the front and rear emergency exits were, and asked if I'd like a braille plane safety card. I was speechless, but said no.
It took me awhile to relax on the plane after that. The flight attendants were trying to be polite, and I know it's not their fault most people either think someone is totally blind or totally sighted. I resigned myself to forgetting about that experience. However, this story gets worse.
Halfway through the flight, one of the flight attendants comes over and asks if I'll need help finding baggage claim in Phoenix. I was actually grateful for this question, and said I'd really appreciate that, thank you.
When I exited the plane's door, there were to CSR people standing their. A shorter lady, and a tall man, both about my age. The flight attendant asked the lady to show me where baggage claim was because I was her 'special needs' passenger... the lady looked at me, turned to the man and said, "You take him to baggage claim, I'm too busy." My jaw began to drop...
The man then said to the lady, "You're kidding me right? Do I need to hold his hand or something?"
OMFG!! I'm glad to say this story is almost over...
Knowing that I was now leaving an airport and not trying to fly somewhere, I decided it was an appropriate time to tell this guy off...
"No, I do NOT need you to hold my Friggin (I did not use the vulgar form of the word, I actually prefer 'Friggin') hand! What I need is for someone to help me find baggage claim, a**hole (I did use that word).
"I cannot see well enough to read the signs, and I'm really sick and tired of you idiots."
He responded, "Well, I thought we were drunk or something."
I told him, "Look, you point your finger where baggage claim is, and I'll try to find it myself, I wouldn't want to inconvenience you."
End of Story.
I'd really prefer to have a better way of conveying my vision problems when necessary, to avoid these sort of situations. People seem to either overcompensate or be just plain rude... though like I said, many people are polite and helpful when needed. - View Full Thread
- It has been a whilw
- Posted: 2008-11-15 14:34:30 By RICK C
- I guess I was not the only one who had trouiblems getting on to the new site. It is a cool redesign, but to post you have to go yo the last message at the end of the pages of messages. Not the most user friendly way. I hope all is well with everyone. I was diagnosed at 42 with SD and have been(THANK GOD) steady at 20/70 for 2.5 years, I have a drivers test coming up at the end of the month, but I am being fitted for a telescopic lens. I ws wondering if anyone had used them before?? Also, I would recommend a GPS for anyone driving with SD. It saves the strain of street signs. A great investment. Take care,
Rick C - View Full Thread
- Where is everyone?
- Posted: 2008-10-30 14:43:22 By Georgette K
- I was just wondering why I haven't seen any of the familiar names that have written on this message board for so long. When my daughter was first diagnosed with Stargardt's all of you were so instrumental in helping me understand and cope, it has been like a lifeline for me. I know there are many others that can benefit from your advice and experience. I don't know if it's a problem with the new web site or maybe we are all just holding our breath in anticipation of success with gene therapy. I hope everyone is doing well.
- View Full Thread
- Discounts on Makeup Services Help Visually Impaired Women Look Their Best
- Posted: 2008-10-08 15:27:23 By Kristine A
- Patti Pruitt, friend of FFB, made it a mission to identify a beauty spa and paramedic aesthetician in every major city throughout the U.S. to offer discounts on make-up services for their visually impaired clients.
If you are interested in permanent make-up and would like to take advantage of the discounts for visually impaired women, visit www.blindnessga.org/servspons.htm. People who want to recommend spas and aestheticians in their community that may be amenable to discounts for visually impaired clients can send an e-mail to Patti at: patti.pruitt@comcast.net. - View Full Thread
- Rocky with Stargardt
- Posted: 2008-10-06 19:10:13 By Roque R
- I was diagnosed with Stargardt at approx. 55 years old. I have had it for 10 years now. I haven't driven since my diagnosis. My eyesight is 20/400 in both eyes. It seems to me that taking some blood thinning medicines helps me see better and get rid of my spots. I am also taking a vitamin called "MaxiVision. It is a complete multivitamin with Lutein total eye and body support. I also exercise my eyes, by rotating my eyeballs in a circular motion both ways. This is the first time that I have gotten on this site, and I would be glad for anyone to email me.
Rocky from Garner, NC - View Full Thread
- Sharing my experiences
- Posted: 2008-09-30 05:57:03 By Jennifer P
- My name is Jennifer and I'm 25 this year. I was diagonosed with SD at the age of 9. Lately I've been looking at alot of support forums and updating myself on the latest news/research for SD. I noticed that there were always alot of questions on people who just found out they have SD or their loved ones was recently diagonosed.
I wanted to share with everyone what my experiences were living with Stargardt's. Perhaps it can shed some light for those wondering what to expect.
As a result, I recently created a blog to share my thoughts on.
http://living-with-stargardts.blogspot.com/
If anyone wants to contact me my email is snowman22@gmail.com
I'd love to help anyone who has any questions. Or feel free to leave comments/questions on my blog! - View Full Thread
- How is everyone?
- Posted: 2008-09-28 13:21:00 By Georgette K
- View Full Thread
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