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• my blog
• Posted: 2013-05-30 01:49:18 By Heather G
• I have started a blog where I will share stories, offer advice, and generally stay connected with people who are affected by Stargardts or other visual impairments.
  Please take a look! Thank you,
  Heather
  
  http://hgarbitt.blogspot.com/
  
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• Austin Resident
• Posted: 2013-05-17 16:38:51 By Richie S
• Is there anyone living in or around Austin, Texas with Stargardt's Disease that would like to meet and share stories/concerns/solutions.
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• Top Stargardt's Doctor in the World
• Posted: 2013-05-13 11:06:14 By Corry P
• Is there a consensus #1 Stargardt's specialist in the world? If you could pick any doctor to treat your Stargardt's who would it be?
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• Our 6-year old daughter just diagnosed
• Posted: 2013-05-13 10:33:38 By Corry P
• My beautiful 6-year old daughter was just diagnosed with Stargardt's disease. Obviously our family has been devastated. We are researching all of the treatment options (clinical trials) and trying to find the best doctors in the world. I thought I might be able to find some other parents on here that have gone through the same process. I am having a very hard time dealing with this. I need some practical advice re how to help my daughter and I need someone to tell me how to help my wife and me cope with this going forward.
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• Diagnosis at 3 years old
• Posted: 2013-03-23 03:10:40 By Debbie K
• My 3yr old grandson's parents have been told he likely has Stargardt but it won't be confirmed until he is a few years older and can tolerate the tests.
  
  Naturally we're devastated and hope this is not the diagnosis. We could see he had vision problems and now has glasses which helped a lot but we can see he still has problems with some things.
  
  How many of you know of anyone diagnosed under 6 years of age?
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• saffron supplements
• Posted: 2013-02-27 22:31:40 By Hayley S
• Has anyone tried using saffron for stargardts or does anyone have information on it? I heard they were doing a study on it in Italy to see if it would help stargardts.
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• Anyone from WNY?
• Posted: 2013-02-15 15:17:03 By Sarah M
• I was wondering if anyone in here is around or from WNY/Buffalo area. We are trying to start a local support group, so if interested, please let me know. Thanks!
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• Seeking an Ophthalmologist
• Posted: 2013-01-12 17:15:12 By Susan D
• I live in the Triangle NC area and I am looking for an Ophthalmologist to go to that has other patients with Stargardt's. Any suggestions?
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• Here I am
• Posted: 2013-01-05 21:13:10 By Alan W
• I noticed some vision changes in my teens, now at age 48 I have been diagnosed with SD. I've always suspected it as I have a 1st cousin who also has this. I need to stop driving and working soon, I have a commercial drivers license.I will lose my health coverage through work but should qualify for medicare/medicade. Does anyone know if my familly will be coverd or what happens to them? Thanks.
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• Posted: 2012-11-30 18:00:52 By Julissa B
• Hi. I am 26 years old. I was recently diagnosed with a form of Macular Degeneration/Stargardts Disease less than 2 weeks ago. I have no family history and this came so abruptly. Only the central vision in my left eye is affected. I'm trying my best to continue on with my regular lifestyle (work, driving, computer, etc.) The worse thing so far is the constant head aches...any advice or tips out there? This is all very new to me. Thank you. -Juli
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• Need help?
• Posted: 2012-10-31 21:34:49 By Zac S
• Im 17 with stargartds, quite comfortable and have come to terms with my condition, if anyone needs you can email me about it feel free the_zacster@hotmail.com
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• Question
• Posted: 2012-09-05 20:25:30 By Lisa F
• My son was diagnosed with Stargardts when he was 16. My daughter, who is 14 is now showing some signs of vision loss. The doctor can't correct her vision and she has a lot of blurring. She has had a visual field test and a fluorocene angiogram done both of which came back negative. I'm just wondering if it's possible that it's just too soon for Stargartdts to show up on tests or if she truly doesn't have it? A
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• Finding a way
• Posted: 2012-06-28 08:34:05 By K B
• Check out a story on a man with Stargardt's who has found a way to become a triathlete.
  
  http://www.doubtnoone.com/#!Video_Out%20of%20Sight/cj4j
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• stargardts disease
• Posted: 2012-05-28 16:23:09 By Kary G
• I am 38. I just found out I have this disease a couple months ago. I have gone to 2 different specialists and they both said the same thing. I wish I knew how long I have before my sight starts to go. Anyone have any ideas? My sight is still pretty good I have a hard time seeing at night to drive. Thanks
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• Doctor in Boston Mass.
• Posted: 2012-04-25 01:40:43 By Jennifer T
• Dr Eliot Berson at Mass. General Hosp. (Eye&Ear Infirmary) He is a wonderful doctor!!
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• More active message boards?
• Posted: 2012-04-19 22:56:27 By Andrew G
• Is there a site out there where people with Stargardt's are more actively interacting with each other? I'm a male in my 20's and have Stargardt's and am finally wanting to get more in touch with others going through the same thing, but it seems like there is no active place online for t hat. these message boards are hardly used and facebook doesn't seem to be getting us together. does anyone know of a place or have ideas on how to fix this?
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• Stargardts Disease
• Posted: 2012-03-26 17:55:46 By Leticia T
• I am 33 years old and have been diagnosed with this retinal disorder. It has completely changed my life in a manner that I never imagined! In the middle of my thriving career and in the midst of completing my college degree. I now feel completely lost. I am currently on disability provided by my employer and in the process of acquiring social security benefits. Please help! I want to know how people deal with this disease and continue their way of living.
  Do they continue college? Are they still working?? Do they qualify for benefits? How can I be considered for clinical trials?
  I just want to know I'm not alone! =-(
  
  Thanks!
  
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• Advanced Cell Techbology News!
• Posted: 2012-02-01 15:57:57 By Agata P
• "As reported in The Lancet, the visual acuity of the Stargardt’s patient improved from hand motions only to 20/800 vision. Before treatment, the patient was unable to read any letter on the ETDRS visual acuity chart. However, by two weeks post-transplantation, she was able to start reading letters, which improved to five letters at one to three months in the treated eye."
  
  
  http://advancedcell.com/news-and-media/press-releases/act-publishes-first-report-of-embryonic-stem-cell-esc-derived-cells-transplanted-into-patients/index.asp
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• retina doctor
• Posted: 2012-01-09 17:40:12 By Willard B
• I need a retina specialist in Boston. My son has Stargardt and we would like to change doctors. Does anybody have a retina specialist they like..who actually talks to you.
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• Learn to listen fast, and help write the software we need
• Posted: 2011-12-11 09:48:29 By Bill C
• I am 48 years old and was only diagnosed with Stargardt's last summer. I'm one of those rare people with non-functioning red cones, which probably explains why it took so long for my central vision to begin to fail.
  
  I don't know anyone else with this disease, but I would like to find them. I want to help people learn how to use text-to-speech technologies that can help them in college and in their careers. I personally read books much faster than I ever did before, using free text-to-speech software that I'm helping develop. I get free e-books from bookshare.org, and I convert them to mp3 files I can play on my Android phone. The Astro Nova player on Android incorporated some code I wrote to speed up the speech, and I can listen at any speed from normal to six times faster. I prefer listening at about 3.5 times speed for now, or about 700 words per minute.
  
  With all the smart people with stargardt's it seems to me there's an opportunity to work together to build any technology we need to make life easier. I'm not letting this disease stop me. I'm a highly paid programmer, and my family depends on me to keep getting paid to write software. The tools out there for people with vision impairments aren't good enough yet, which is why we have to build them ourselves. I so some volunteer coding for the Vinux project, which is an operating system for people with vision impairments based on Ubuntu. I also work with the NVDA and Orca guys who develop free screen readers for the blind. I'm helping integrate the best free text-to-speech program, called Open Mary, into NVDA and Orca. However, it's really strange that I'm the only one I know with stargardts disease doing any of this. Where are all the young smart people who want to contribute to building the tools we need? There are many blind people involved.
  
  Best regards,
  Bill
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• I have Stargardts:(
• Posted: 2011-12-09 13:47:43 By Abbey D
• Hey I am 13 I was diagnosed recently but have been living with Stargardt's since I was 8. I would like to just email someone my age who has it or any parents who want to understand it.
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• I just found out that my daughter has Stargardt Disease
• Posted: 2011-11-26 10:03:11 By Karri J
• I had no idea that my daughter has this disease until I "googled" it on the web. She is only 7 years old and every year since her birth her vision is getting progressively worse. She wear trifocals to help her but I've noticed that they aren't helping as much as they are supposed to. There is no support groups in my location. I live in Olean, New York State. I hope there is someone out there who can help us with the fight.
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• Support groups
• Posted: 2011-10-23 22:11:55 By Thomasa B
• Soes anybody know how to find support groups for people with Stargardts disease, or any retinal disease, if there are any?
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• Qualifying for Social Security benefits?
• Posted: 2011-09-19 17:35:43 By Christy V
• My question is whether I will be able to qualify for social security since I have almost 20/20 vision in the very center of my eyes even though I can't see anything right around it. My Stargard'ts effects most of my macula. I have a wreath shape of missing vision with a tiny spot in the center that I can see almost 20/20.
  I'm 43 and was diagnosed a year ago with Stargardt's. I was having a hard time driving at night the past few years and often couldn't find my cursor on my computer screen. I had to give up driving this past summer because my blind spot was too significant. I work as an Art Director in Advertising and do everything on the computer and have to read lots of detailed documents and my work must be accurate. Well things are slipping in the work area. I often can't find my cursor on the screen, I miss information in emails or in documents and typos are rampant in my work. I can't keep up with the workload since it takes me so much longer. I've talked to HR and as I'm not able to do my work in an efficient matter in the future, I will have to go on disability. Can't I also apply for SSD to help with my loss of income?? I thought that even if I went and got another job that was lower level because of my disability I could also get SS to help make up the difference in salary? Anyone know about this? Thanks.
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• Episodic dark spots when first waking with stargardt's?
• Posted: 2011-08-21 20:40:35 By Lauren P
• My husband was originally diagnosed with MEWDs three years ago because he had episodic spots in his vision when he first woke up- but he was very atypical and no one was convinced of this diagnosis. Last year his vision started deteriorating steadily and eventually the amazing doctors we've been working with decided he has Stargardt's. However, his genetic test came back negative. The doctors still believe he has stargardts though. Despite having the frist signs at 40 heseemsto be a classic case of it.
  This week he started having another bout of seeing a dark spot in his central vision when he firsts wakes (these always coincide with periods of intense stress for him). Anyway, does anyone have experience with this? thank you.
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• Clinical Trial to begin in June
• Posted: 2011-06-07 12:05:51 By Caleb N
• There is an exciting new clinical trial beginning this summer in Portland for a gene therapy treatment for Stargardt Disease. They will be recruiting volunteers ages 18 and up soon. You can track the progress of this study by going to this link: http://www.clinicaltrials.gov/ct2/results?term=Stargardt
  It is the StarGen clinical trial. A cure is in sight!!
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• Visually impaired PODCAST
• Posted: 2011-06-05 17:49:54 By Alvaro G
• Hi, i am Alvaro and i am visually impaired with RP and cataracts.
  I am doing a audio pODCAST FOR THE BLIND TO RAISE AWARENESS ABOUT OUR LOW VISION DISEASES.
  i RECENTLY INTERVIEWED A GIRL FROM THE us WHO HAS sTARGARDS DISEASE AND WAS A VERY INTERESTING TALK.
  i INVITE YOU ALL TO LISTEN TO THE INTERVIEW AT:
  HTTP://LOWVISIONBUREAU.PODOMATIC.COM
  aLSO YOU CAN ADD ME ON fACEBOOK AT WWW.FACEBOOK.COM/MRMAGOONY
  tHANKS.
  aLVARO.
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• Just been dignosed with Stargardt's
• Posted: 2011-05-02 15:51:37 By Frank G
• went for my yearly eye exam and the eye doctor sent me to a retinal specialist,the specialist told me I have stargardts and didn't give me much info on it, I'm a single father who has custody of my 2 kids and I'm worried on what is going to happen!If anyone knows of or can recomend a good specialist or hospital I can contact to get info on this it would be a great help. I am going for a second opinion this week since the other specialist forgot what bed side manors is.I also live in New Jersey. thanks
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• Info on Dr's
• Posted: 2011-02-19 11:02:08 By Brice F
• Just ran across this forum looking for some first hand accounts of life with SD.
  
  I'm 26 years old and was just diagnosed with what is believed to be SD. My retinal specialist has referred me to the University of Michigan's Kellogg Eye Center to see a genetic retinal specialist. I was wondering if anyone has been there for treatment/diagnosis/2nd opinion anything and what their thoughts were.
  
  I was devistated to found out that I had this disease. My wife has been awesome to say the least. As of now my vision is still 20/25 (apparently 20/40 in my right eye alone). The most noticable times I have difficulties are at night (especially driving) and lower light situations.
  
  My biggest worry at this point is for my two children. We began having kids before this diagnosis and they are now 2 and 2 months. My wife was pregnant when I was diagnosied.
  
  Thanks in advance for you replies and perspective!
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• ACT STARGARDT TRIAL I/II
• Posted: 2011-02-09 07:37:40 By John L
• Doew anyone know when the first results from
  this trial will be published????
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