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- 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.
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- 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
- Dr. Ayugari
- Posted: 2008-09-24 03:23:08 By John L
- i d like to have Dr. Ayugari s email to contact with
thansks john - View Full Thread
- Confused - can anyone advise?
- Posted: 2008-08-23 07:17:24 By c s
- I was told on 1st August by an opthalmologist at the hospital that my 5yr old daughter has MD, which was genetic. Having never heard of this condition and being told that all her tests were fine (ERG,amsler grid etc.) and that she had 20/20 vision I left not feeling to worried.
Of course on coming home and looking on the internet to find out exactly what MD meant we were devestated.
I went to my GP looking for answers to all the questions I now had. He advised waiting until the letter from hospital cam and now after reading it I am more confused than ever.
The letter states that she is
Thought to have problems with the macula
Some slight speckling of macula reflex
Does not exclude MD
Lack of symptoms
Vision 6/6
My GP feels that this basically states the she does not have MD but the opthalmologist said to us she had MD.
We are now unsure where to turn for answers.
Can we get a genetic test?
Should we see another doctor?
Can anyone who has a young child diagnosed tell me their symptoms?
Can anyone help with any advice - View Full Thread
- Help with declining vision
- Posted: 2008-08-22 13:06:47 By Suzanne P
- Hi, if anyone can give me some advise on what to expect I will appreciate it. I was diagnosed with Stargardts at age 28 but had the good forturne not to start loosing sight until about 6 years ago (am now 55). I am really struggling now with many blind spots, poor night vision, difficulty in reading phone numbers, clocks, etc.
I am not even sure what my vision is because it seems very difficult for the optometrist to get a true number. I do still drive in day light (very carefully) and sometimes I see better than others expecially in the a.m. Anyone that has already been thru this please give me some advise and hope. You can email me off this list if you want to. - View Full Thread
- Reading
- Posted: 2008-04-30 16:55:51 By Casey F
- I have had SD for years and usually use a hand held magnifier for reading. Lately I am finding it annoying when I am reading for long periods of time. I love to read and am looking to find a better way. I am willing to spend the money on a portable cctv, if it is worth it. What other aids are out there that would make reading a little more pleasurable?
Thanks! - View Full Thread
- New Here
- Posted: 2008-04-29 21:49:23 By Helene S
- Hi everyone,
I've lived with Stargardt's for 17 years (probably longer)but have only recently begun perusing sites and message boards for the visually impaired. The main reason for this was that with a young family and a job, I didn't have a lot of free time and I think I've managed to "get by" pretty well all these years.
As I recently lost my job of nearly 20 years, I'm contemplating my professional future, unsure of what to do next. Of course, my disability has to be a major consideration. In your expreience, are there some fields that really stand out as occupations that a sight challenged person can realistically expect to succed in? - View Full Thread
- Gene Therapy to Restore Vision
- Posted: 2008-04-28 00:17:07 By Chin S
Pls visit this BBC web site ans see
if anybody in the UK can give us real practicle side of this therapy please...
http://news.bbc.co.uk/2/hi/health/7369740.stm- View Full Thread
- new outreach for Stargardt community
- Posted: 2008-04-23 12:35:19 By dan r
- Hi, my name is Daria Zawadzki. I was recently introduced to Dan Roberts, Director of MD Support, because we share the common goal of providing support to teens and young adults with Stargardt disease. I currently facilitate support groups for the Jewish Guild for the Blind, and we have partnered with MD Support to offer telephone support groups for teens and young adults who are affected by the condition. We will begin in June with weekly toll-free meetings. If you would like to learn more, please visit www.mdsupport.org/telesupport/jgbflyer.html .
If you are the caregiver of a teen with Stargardt disease, I will conduct parent orientation sessions via teleconference before the group starts. This is to help you feel comfortable about the activity your child will be involved in.
In 1992, a few months before arriving at Harvard University for my freshman year of college, I was diagnosed with retinitis pigmentosa, a retinal degenerative disease. Those first few years I was in shock and denial. The most incredible thing to come from accepting RP as just a part of life, and being very open about it, is that I have learned in the deepest sense the power of friendship and human kindness.
After graduating Harvard in 1996 with a BA in Psychology, I studied social work at Columbia University and law at Fordham University. I am a licensed clinical social worker and lawyer. I worked as an elementary school counselor for three years before starting a family. I am blessed with a wonderful husband and two amazing toddlers. They are a handful! I have enjoyed being a full-time mom for the past three years.
In October of 2007 I began to work part-time for the Jewish Guild for the Blind. I facilitate a weekly support group for parents who have children with retinitis pigmentosa. Group members share their fears, struggles, joys, accomplishments and advice. It is an incredibly rewarding experience to be a part of this process. I would be honored to facilitate a support group for teens and young adults with Stargardt disease. I know a group like this would have been very helpful to me when I was a teenager dealing with the challenges of living with low vision.
It takes great courage to speak openly about one’s challenges in life. Sharing experiences with one another, however, will give you strength and allow you to take comfort in the knowledge that you are not in this alone. Dan Roberts' work with the MD Support Community is very inspiring, and I hope I will get to meet many of you soon.
Sincerely,
Daria Zawadzki, J.D., L.M.S.W.
Jewish Guild for the Blind
New York, NY
- View Full Thread
- Sirion Information
- Posted: 2008-04-21 21:14:02 By Georgette K
- Hi Everyone,
The following is an article that is worth taking a look at:
http://sev.prnewswire.com/biotechnology/20080421/CLM05521042008-1.html
Regards,
Georgette K. - View Full Thread
- Help avoiding vitimin A
- Posted: 2008-04-18 11:10:58 By Kim M
- Hi,
I have read that SD folks should avoid vitimin A and wonder if anyone can help identify what foods to avoid. For example, I've been eating lots of carrots and now wonder if this is bad for my SD? Can anyone list the top 10 foods to avoid?
Thanks,
Kim - View Full Thread
- interesting news
- Posted: 2008-04-16 12:30:25 By Doug R
- I ran across this today and thought I'd pass it along. Go to http://www.medicalnewstoday.com/articles/104244.php
Its nice to know that every day brings us just that much closer to a cure. I look forward to the day I can say my son HAD Stargardts!!!
Doug - View Full Thread
- Fenretinide
- Posted: 2008-04-15 06:05:49 By Kim M
- Hi,
Does anyone know what the latest news is on Fenretinide? The article on this website is quite old but the drug sounds really promising - I have searched web and cannot find out much info on how this drug has progressed.
Thanks,
Kim - View Full Thread
- Negative Genetic Test????
- Posted: 2008-04-13 20:58:14 By Heather N
- My 10 year old son was diagnosed with Stargardts by a fluorscene angiogram (sp?) in September and I just got a call from his retina specialist saying that the genetic testing he had done in Iowa (we sent the blood there)came back negative for the known Stargardts gene. She said that doesn't mean he doesn't have it. It doesn't make any sense to me. Has anyone had a similar experience? She said she would have a genetic counselor get back to me. Any thoughts would be much appreciated! Thank you!
Heather - View Full Thread
- Neurotech
- Posted: 2008-04-12 16:26:48 By Roslyn S
- HI There Everyone: Is anyone familiar with the phase 2 clinical trials Neurotech is conducting? They are acheiving results with the a cila neurotrophic factor implant (CNTF) on patients with RP whose vision is 20/100 or worse. You can read about their research by going to:
http://www.neurotechusa.com/news_press_050105.asp
My RS is one of the surgeons doing the implants. He feels that CNTF has exciting implications for SD patients. If Phase 2 goes well, they might get FDA approval. I am hopeful that there may well be a "therapy" for inherited retinal diseases in the near future! Kindest regards, Roslyn - View Full Thread
- hand held cc tvs
- Posted: 2008-04-04 21:45:32 By hessie k
- hello all,
I was hoping that maybe someone could tell me which one of these things work best for those of us with SD.thanks
Hessie K - View Full Thread
- blue light
- Posted: 2008-04-01 13:58:54 By Karen B
- we wear sunglasses outside b/c blue light is harmful to our condition. Blue light is also emitted from other inside items such as light bulbs, computer screens, tv, etc.
I found this company in one of my magazines. The products are designed to assist with sleeping disorders, but I think they might also benefit us. https://www.lowbluelights.com
i have purchased the computer screen cover and a few bulbs. They are very yellow and require an adjustment period. has anyone else used their products? - View Full Thread
- Gene Therapy
- Posted: 2008-03-30 11:39:07 By Georgette K
- Check this out. I wasn't aware that someone could pay to part of a clinical trial that isn't approved yet.
http://www.casperstartribune.net/articles/2008/03/30/news/casper/f6e545cf977bd2388725741b0075cbe7.txt
What do you think? - View Full Thread
- all new
- Posted: 2008-03-28 14:57:40 By mandie k
- Hi I am 26 years and have SD I just want to know if I am goeing to get totaly blind ore what?
- View Full Thread
- Blind Painter
- Posted: 2008-03-26 13:53:41 By Eldie T
- Not sure how many people saw this, but it should bring some inspiration to your day.
http://www.youtube.com/watch?v=8P84bfFpVWE - View Full Thread
- Gene Therapy
- Posted: 2008-03-24 11:35:42 By Nina S
- We are looking into possible gene therapy for our son who was diagnosed with SD. Does anyone have information about it they can share? My understanding is possible clinical trials will start later this year.
NS - View Full Thread
- Gene Therapy
- Posted: 2008-03-24 11:35:38 By Nina S
- We are looking into possible gene therapy for our son who was diagnosed with SD. Does anyone have information about it they can share? My understanding is possible clinical trials will start later this year.
NS - View Full Thread
- Dr. Nolan
- Posted: 2008-03-24 11:33:00 By Nina S
- My son has SD, was diagnosed in Dec '05 and we started using Echo therapy last October. Little results were seen using one drop every other night so we increased to 2 drops and he had 2 instances of double vision, and also got a very serious eye infection. I do not think Dr. Nolan is completely honest about Echo therapy, and never truly answered concerns or questions I had about the treatment from the onset. Do not waste $1,500 trying his treatment, save it for something that can truly make a difference.
NS in Casper, WY - View Full Thread
- TREATMENT for SD
- Posted: 2008-03-14 04:31:38 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???
Hope to hear from you
Loran from The Netherlands - View Full Thread
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