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This Juice is Worth the Squeeze

Dr. Stephen RoseFor those of you who don’t know me, my name is Steve Rose, and I’d like to welcome you to Eye on the Cure, the Foundation Fighting Blindness’ first, and official, blog!

For the past seven years, I’ve been lucky enough to serve as chief research officer of the Foundation. Now, I had some pretty good gigs previously, including a 14-year stint at the National Institutes of Health, where I supervised many research initiatives. But I say “lucky,” in this instance, because the Foundation – or FFB, as it’s known to many – is truly a unique organization.

The nonprofit is singularly focused on finding preventions, treatments and cures for a group of diseases affecting the retina – the light-sensing area in the back of the eye — that cause vision loss and, sometimes, blindness in more than 30 million people around the world.

Forty-one years ago, when FFB was founded, next to nothing was known about retinal diseases. Not one disease-causing gene had been identified, and there were few specialists and no research centers focused on treatments. But FFB never hesitated. And, to date, it’s raised more than $450 million for research and supports scores of researchers worldwide, many of whom are engaged in clinical trials for treatments and cures.

And do you know how many retinal-disease-causing genes have been identified, most of them by researchers supported by FFB? More than 200!

Here, in the office, I’m known for my “Steve-isms” – which, really, are just old sayings I apply to the work we’re doing at the Foundation. One rhetorical question I often ask is, “Is the juice worth the squeeze?” Translation: “Is this project worth the time, effort and funding we’ll need to put into it?”

Well, FFB, for reasons I’ve stated above, is in the unique position of being the authority on retinal research. And as its representative, I’m plugged into a wide-ranging network of specialists, from eye doctors to researchers, who know exactly where the developments of treatments stand, and where they’re going.

Which brings me to this blog. We’re trying to reach the millions of people around the world who are either directly or indirectly affected by vision-robbing diseases. This blog is “worth the squeeze” because it gives me, and therefore the Foundation, the opportunity to share not only our expertise, but the expertise of those in the field we consider invaluable.

So, beginning this week, I’ll share with you posts covering every aspect of retinal research in a variety of formats (from lists to Q&As to videos), and in language that’s easy to understand. And I welcome your comments and questions to ensure that what I’m covering is understandable, relevant and valuable.

To kick things off, you’ll be seeing a post every day this week, so as to get a taste of what Eye on the Cure has to offer. Starting next week, you’ll see one to two posts a week, some of which will be updates from the road.

So, until then, please bookmark Eye on the Cure and drop in as often as possible. I look forward to sharing information with you and hearing what you have to say. You can also submit any questions you might want answered. In fact, you can expect that I’ll be answering reader questions in occasional video posts in the future.


79 Responses to 'This Juice is Worth the Squeeze'

  1. Joe C. says:

    Thanks for posting!

  2. My 15 years old son is suffering from Macular Degeneration since he was 5-1/2 years old. We reside in Pakistan. Since then we are knocking door to door for the treatment of my adopted son. We went to USA twice at Nolan Eye centre and his Angiography was done there. Dr. Nolan Confirmed that he is suffering from Stargardt’s disease. Later on his Genetic testing were done at carver Lab in USA for both Autosomal and recessive Stargardt’s. Both test were negative for Stargardt’s.

    We again took him to National Eye Hospital in Singapore. His ERG and Fundus photos were also done there. The Doctor confirmed that he is have Cone Rod Dystrophy.

    His Genetic testing was again done at the Carver Lab for Cone Rod Dystrophy.

    The results were negative again.

    We still don’t know what to do now and were to go?

    We want to have his correct diagnosis and we seek your advise.

    We note that Stem cell and genes therapy will be the cure?

    How long these cure will come.

    We can also bring our child for clinical trials there.

    Kindest Regards
    Akbar

    • Paul Smith says:

      Hi Akbar

      Have you ruled out congenital x-linked retinoschisis (CXLRS)? My son has CXLRS.?

      Best regards

      Paul Smith

      • Robert Grassi says:

        I also have cllose friends
        with two sons who have retinoschisis and would like an update on research in this area.

    • Farshad says:

      Maybe he has LCA, did you get him checked for LCA genes??

    • Mona says:

      Hello Akbar,
      Sorry to hear about your son,i have a 24yrs old son,was diagnosed by Dr. Duncan @UCSF in San francisco. She is a one of the best Dr. in this area.
      Good luck!!!

    • EyeOnTheCure says:

      Hi Akbar,

      Thanks for your questions. I’ll try to do my best to answer them, but please know that because I am not a medical doctor (I am a Ph.D.), it is not my place to make clinical recommendations, but keep these points in mind:

      1) Cone-rod dystrophy and Stargardt disease have many similarities, so it is understandable that you are getting different diagnoses.

      2) Genetic testing is the best way to confirm the diagnosis. And while these tests are getting better all the time, researchers can still have a difficult time finding the disease-casuing mutations. Make sure you follow-up with the lab every year or two and ask them if it makes sense to retest your son’s DNA sample.

      3) Stem cells and gene therapy for Stargardt disease are both in early clinical trials and they hold much promise. I am fairly certain that your son is too young for these studies, but visit our Web site or clinicaltrials.gov to see what the inclusion and exclusion criteria are for these studies.

      4) Clinical trials take several years to conduct, so as difficult as I’m sure it is, please hang in there. Please know that we at the Foundation are doing our best to get treatments and cures out to you as quickly as possible.

  3. Paul Smith says:

    Hi Steve

    Firstly, good luck with the organizations new blog, I hope to see and share many articles/posts with you and others.

    To give you a bit of understanding of my interest, my son (now 5 years old) was diagnosed in January 2010 with CXLRS (Congenital X-Linked Retinoschisis), this was confirmed through oral examination, OCT scans, ERG and the present of an electo negative B-wave. CXLRS is quite a rare genetic condition that stems from the RS1 gene (in most cases), resulting in a lack of the protein (retinoschisin) that is associated with the maintenance of the retinal layers. ‘Schisis’, derives from the Greek word meaning splitting – which is a common factor for people with CXLRS – splitting of the retina. Because CXLRS is quite rare and can be unpredictable when it is active, common complications to central and peripheral vision can include retinal tears, vitreous hemorrhages and retinal detachment.

    My son has signs of such retinal splitting, more apparent is left eye, he has also had 3 vitreous hemorrhages in the past 12 months.

    Although mouse model research into RS1 gene replacement therapy has been ongoing,there is no cure/treatment as yet for CXLRS.

    Through my research into various news/medical stories around stem cell treatment for retinal diseases, I believe that stem cell replacement therapy/treatment is making very good progress in respect of retinal research and treatment – which is exiting news for my son and indeed millions of other people with retinal challenges. I suspect we will see vast improvements in treatments for such retinal diseases within the next 5-10 years.

    Sometimes my wife and I have felt quite alone due the lack of support and advice for this rare condition – no real thought of anyones, it just the way it is ;) I am hoping I can find support, advice and sharing of experiences with other people through blogs such as this one.

    We want to know as much as we can about CXLRS, stem based retinal research and indeed the great work as a whole that organizations such as the FFB do to help fight blindness.

    I will continue to monitor the great work that FFB do and hope to contribute to your blog and and support your organisiation where I can ;)

    Once again wishing you and your team the best of luck.

    Paul Smith – United Kingdom

    • EyeOnTheCure says:

      Hi Paul, thanks so much for your comment and for sharing your family’s story. We hope you’ll find this blog useful! Stem cell therapy is a very exciting topic in retinal research and you can expect that we will be talking quite a bit about it on this blog. Thanks again and please stay tuned!

  4. RobertAZ says:

    Hello all,
    I am looking forward to learning the latest developments in fighting blindness. I am 52 years old and have autosomal recessive RP. I am in end-stage; with sight and use JAWS to access use of my computer. I am somewhat of a new-be with tech; and am eager to embrace more tech. I look forward to sharing with others on this site.

    • EyeOnTheCure says:

      Hi Robert, thanks for posting. We hope you’ll find this project useful to you (:

    • Michele MacDonald says:

      RobertAZ, I was happy to read you mention technology available for people suffering from blindness. With macular degeneration – my grandfather and aunt, blindness in one eye since birth and now changing from dry, geographical macular degeneration to wet In his good eye – my father, and central serous since 32 years old – me, makes me want to know of everything there is available for my father and me. Please let me know where I can find more about the JAWS you use.

      Thank you to everyone working towards the goal of bringing light to the world.

      • Michele MacDonald says:

        I apologize for not reading further before writing. I was just too excited to know my dad might be able to continue using a computer.

      • RobertAZ says:

        Hi Michele,
        There are several possible options that might work for your Dad. If your Dad is a U.S. Veteran; the VA Medical Centers have rehab programs for the Blind and Visually Impaired. The VA program can help in many was for teaching him skills for independent living; including accessibility to computers. There are other “Blind Organizations” that can help as well. Best regards.

  5. LaurieUT says:

    Hi Robest,
    I also have RP – still awaiting my genotype results. I am now also looking for more tech. Can you tell me about JAWS? Thanks

    • RobertAZ says:

      Hi LaurieUT,
      JAWS is a screen reading software. It stands for Jobs Accessible With Speech. It was developed by: Freedom Scientific located in St. Petersburg FL. It is primarily used by very low vision or totally blind. You do not use a mouse at all with JAWS; your navigation is totally done with keyboard commands. Five years ago, I literally knew nothing about computers LOL and now, look at me.
      Several years ago my family: brothers, sisters, parents and 1 grandmother were tested with blood samples to determine my autosomal recessive status. I don’t know if Doctors of genetics still need family samples to make that determination or not.

      • LaurieUT says:

        Hi Robert,
        Thanks for the information on JAWS. This may be very helpful in my job – which has requires alot of word processing. Does the navigation require typing or do you use voice commands?
        So far I’m the only one who has been tested in my family. I was diagnosed with RP at 40, am now 59. There is no family history of RP or other eye disease, but there may be interst testing in my family members once my gene panel comes back. I do worry about my children/grandchildren.
        Thanks again

        • RobertAZ says:

          LaurieUT,
          I type using JAWS. JAWS has no “voice recognition ability”. I would suggest getting training threw for example, your State agency for the Blind and visually impaired to be evaluated for what works best for you. Depending on your vision, you may have several options.

      • Emelie says:

        Hi Robert,
        Could they determine your autosomal recessive status with help of your family members samples? I have had an DNA test but it came back inconclusive, so for now they can’t give me a definite diagnosis. But maybe if I asked my family members then?

        • RobertAZ says:

          Hi Emelie,
          My testing was done more then 10 years ago. Honestly, I don’t know if family testing would help narrow-down the search for the defective genes in your case or not. From what I understand; not all types of RP have been genetically identified yet. You may want to ask the lab that did your testing that question or maybe Dr. Rose might have some insight or advice on this matter.

  6. Being blind single parent with no family locally, is quite challenging. It is so difficult to find others, since I fail to spot them (ha ha).
    I keep my spirits high and hope that one day you will find a cure before I forget why being able to see a string bikini was so important. I am 47 now.

    I will difinitely keep an eye on this blog. Thanks for any effort you give.

    P.S. – Tell Foolish Tea Party that Jesus like Mass Transit too, and killing High Speed rail is a bad idea.

  7. Lisa Evans says:

    My sister and I both suffer from RP so I am anxious to learn all I can from your blog. Diagnosed in 1990, I have a slow progressing form of RP, while my sister has the more rapid form and has lost 99% of her vision in only 8 years. Good luck and thank you for your dedication to this cause.

  8. Cindy Lou says:

    Thank you for this new blog.
    I have PR for over 21 years now and I still have hope that one day I will be riding my own motorcycle next to my husband.
    Keep up the hard work FFB!
    Cindy Lou

  9. Farshad says:

    Hi Akbar,

    Did they check for LCA genes, maybe he has LCA.

  10. Hi Steve,

    I have been looking forward to your blog since I got your promo. It sounds like it will be a great help to all of us afflicted with with retinal “problems”.

    So as a client and a fellow blogger, I welcome you, and wish you great success.

    George
    –//–
    http://Www.Unmitigated-Truth.com

  11. Desiree says:

    My name is Desiree. I was diagnosed with RP when I was 12 years old. My mom and her brother both have it. I don’t know what kind I have, but i’m now 21 years old. I’m really glad I stumbled across this blog in my e-mail, even though it was addressed to my mother. Thank yOu for the research you’re doing and for giving me hope of a cure someday!

    • EyeOnTheCure says:

      Desiree, thank you for sharing your story with us and thank you for supporting our mission!

    • RobertAZ says:

      Hi Desiree,
      I think all of us are enthusiastic about learning more about RP and how it affects us as individuals. Have you considered Genetic Counseling; to give you more information concerning having children? You don’t have to answer; but you may want to consider the odds of passing RP to your children. I am fortunate; in my case; neither of my 2 sons were afflicted with RP or will pass on a dominate gene of RP. You are young and will very likely see a treatment/cure in your lifetime JMO.

  12. Andrea Reed says:

    Hi, thanks for the website…I have a questions for you,,my father had macular degeneration, and they told me it was heriditary, I’am 60 should I be taking a vitamin to try and over come this….thanks

    • EyeOnTheCure says:

      Hi Andrea, thanks for posting. This is a question we would recommend you talk to a doctor or retinal specialist about. They will understand your situation and family history better, to give you a more thorough answer. We wish you the best!

  13. Stephen says:

    Thank you Dr. Rose for this blog. This is going to be much better than the newsletter. I really appreciate this!
    I too was diagnosed with a form of RP. I would like to get a specific diagnosis but I don’t know where to go or who to contact. Maybe you can help? I had measles when I was about 2 yrs old and it left scarring on my right lens and nerve deafness in both ears so I believe it is also the cause of my RP condition. No one else in my family did not have it and my two adult children do not have it.
    Thanks again,
    Stephen

    • EyeOnTheCure says:

      Stephen,

      Thanks for posting. Given that everyone’s situation is different, we recommend you discuss these questions with your doctor or a retinal specialist. They will understand your situation and family history better, to give you a more thorough answer. Please take care!

  14. Diane Miller says:

    My daughter Maxee lost her vision her first semester in college from Stargardt’s. Here is a bit of her history. http://www.mdsupport.org/profiles/maxee.html
    and http://www.hsvvoice.com/news/2008-08-27/news/079.html
    She has been a pretty tough cookie over all this. But still praying every day that there will be a cure. Could you please let us know the status of the studies on Stargardt’s?

    Great that you have this blog. Thanks for taking the time.

  15. cathy says:

    I am 55 and have RP, luckier than others but still have many issues. I am the only one in my family with the eye disease. I have been in many trials but now they are all stopped and I don’t have much hope left. I will enjoy reading this blog!!!

    • EyeOnTheCure says:

      Thanks for sharing your story Cathy. We are excited to have you as a reader!

    • RobertAZ says:

      Hi Cathy,
      I want to thank you for participating in clinical trials. It takes a lot of courage to make that choice; not knowing what the outcome might be. I sometimes feel like my insulin-dependent diabetes is more of a PIA then blindness LOL. Anyway, this seems like a great site for support among peers. Best Wishes

  16. monica says:

    I am interested in retinal fractal implants. What are your thoughts on this, and should we consider investing in research for
    this?

    • EyeOnTheCure says:

      The fractal implant is interesting, early stage technology. It is still at a conceptual stage, many years away from being ready for study in humans. In brief, they appear to be a more sophisticated version of an artificial retinal or prosthesis. Because they are more structurally complex, researchers believe they may integrate into the retina better than a flat device. It will be interesting to see how it develops.

  17. Brian M says:

    Hello everyone,

    My brother and I suffer from Cone and Rod Dystrophy. I have two questions. In your professional opinion, is it realistic to believe that treatments/cures will be available in the next ten years.

    Secondly, I’ve done some research online and found a clinic in Canada called The Wellspring Clinic. Does anyone know if this is legitimate?

    Thank you for your time and thanks for the blog.

  18. Paul Lapetina says:

    I was wondering if anyone else is having trouble reading the text on this blog? The print seems faint and/or the use of colored font also makes it harder for me to read the text. Other than this I’m excited about this new blog.

  19. Zuby says:

    Hi Dr. Steve,
    Thanks for creating this blog. It will help share a lot of information on current research.
    I am very interested in the SMD clinical trials at UCL London. Please, how can we
    discuss details ?

    Hi Diane Miller,
    There are a number of clinical trials going on at the moment for Stargardt’s.
    I’ll paste below several links related to the research.

    - Stargardt’s clinical trials list on clinicaltrials.gov
    http://www.clinicaltrials.gov/ct2/results?term=Stargardt%27s+Macular+Dystrophy&recr=Open

    - First patient in London
    http://www.ucl.ac.uk/ioo/index.php

    - First 2 patients at UCLA
    http://www.blindness.org/macular-degeneration/3058-participants-in-the-first-stem-cell-clinical-trials-for-retinal-disease-show-improved-vision

    Thanks.
    Zuby.

  20. Zuby says:

    Hi Diane Miller,
    I just read your daughter’s stories. WOW. Kuddos on mom and dad
    being involved. It makes a world of difference.

    I know a young lady at UT Austin, age about 19ish, who also has Stargardt’s
    and is still attending school. Let me know if you need introductions.

    Zuby

  21. Diane says:

    Hi,I was diagnosed w/RP in 1988 (I am 52 yrs old) and was devastated. I have only approx 10% visual periphery. I have not been genetically tested and do not have $1000.00 right now for this. What is a realistic time frame and cost for the stem cell or gene therapy? Is it only performed on a genetically tested case?

    ps…I can’t express my admiration for the courage that a lot of people have w/RP. I hope I can get there.

    • LaurieUT says:

      The National Eye Institute at the National Institutes for Health (NIH) has a program called EyeGene that will do your genetic testing for free. Here is the link to their website: http://www.nei.nih.gov/resources/eyegene.asp
      It may take up to a year to get your results. Best of luck

    • EyeOnTheCure says:

      I admire the courage and tenacity you bring to life with only 10 degrees of vision. For those who don’t know, the normal horizontal visual field is nearly 180 degrees.

      Yes, it will often be necessary to have a genetic diagnosis to participate in a clinical trial, but not always. It will depend on the type of treatment.

      I recommend that you contact a genetic counselor to discuss testing and its cost. In some cases, insurance might pay — in other cases not.

      Visit http://www.nsgc.org to find a counselor in your area.

      Also, visit http://www.blindness.org/genetic-testing for more information on genetic testing for retinal diseases.

      Stay tuned to the Foundation’s Web site for more information on emerging treatments and clinical trials. We’ll provide information on timeframes and costs as it becomes available. It is still a little early to predict or report these parameters.

  22. Paul-h says:

    Hi all at FFB. I shall be visiting your blog daily from here in the UK where we have a 11 year old with RP cauaed by a faulty gene CRB1

    Please keep the good work going.

    Best wishes

    Paul

  23. Leonor Tercero Peña says:

    Dear Mr. Rose: I am Spanish, my husband suffers from R.P and I have always looked for a cure for him since we met 32 years ago. It has been a hard way since then, realizing is vision was worsening and I could no nothing to stop it. Today, he is legally blind but my hopes on you and so many people working for us is great. That is why I really want to tell you Thank you very much and please do not leave us. To be a helping hand for the foundation, I am making arrangements to meet a great number of familiars and friends at the country to have lunch. The funds I collect will be sent to you and also some photographs.
    I admire you and I really dream on meeting you since you stand for my happiness. Thank you very much and good luck, of course this juice is worth the squeeze!!!!!!!

    • EyeOnTheCure says:

      Leonor, Thank you so much for your kind words and support of our Mission. The support of those like you and your family and the need for cures are what keeps us going. Thank you!

  24. Eddie Russnow says:

    Steve,
    This is great, looking forward to the reposnses you get from those visiting and viewing the blog, looks like it is off to a great start.

  25. Linda Pearson says:

    Over the last ten years I have received a number of diagnosis – Von Hippel Lindau Disease, Macular Degeneration, and Ocular Histoplasmosis. My ophthomologist tells me I could be a poster child for what can go wrong with ones eyes. I have seen three different retina specialists; one diagnosed the VHL and AMD; the next one diagnosed the Histoplasmosis; and the third one said he didn’t know – that he had never seen eyes that looked like mine. I am almost 60 years old now and go for Avastin injections every one to two months. The injections do seem to slow down the progression of whatever is going on and for that I am grateful. I do hope your research will make diseases easier to diagnose and treat – if not for me, at least for retinal disease sufferers in the future.

    Keep up the good work,

    Linda

    • EyeOnTheCure says:

      Linda, thank you for posting and sharing your story. I understand that your journey has been a complicated one but its good to hear that the Avastin injections seem to be working. Thanks for your support!

  26. Let me second Paul’s Feb. 6th statement about readability of the site. It’s not too much of a problem for me, although the grey font that is used for these replies could be more robust – for example: BLACK
    Too many web designers are invested in all of the design skills they learned in school and don’t pay enough attention to the needs of the visually impaired.
    The lime green background (at least, it looks lime green to me) used for the sidebar doesn’t have good contrast with the white foreground font.
    Stay away from background gradients and use a darker color for the background with white type. It’s all about CONTRAST. Even the middling red type on the pale blue background at the bottom of the screen causes some eye strain, but at least it’s readable.
    Thanks for listening.

  27. Let me clarify my previous post: The replies are easy to read after being posted, but the type is way too light during the typing and editing of the post.

  28. mary says:

    I’ve bookmarked the page. Thanks for starting it! I plan on reading it frequently and asking alot of questions. I have autosomal dominant rp. My grandmother, mother, aunt,sister, cousins, and one of my daughters also have it. I’m encouraged for the first time with the current research going on and hope to learn more about it.

  29. Maurie HIll says:

    Welcome Steve,
    An “Eye for the Cure” blog’s time has come – when good science is leading to practical treatment in our lifetime! I’ll be anxious to hear what you say about the recent ACT stem cell results, which seem pretty stunning to a layman with Stargardt Disease. When you get to that topic, please comment on your best guess at a time frame for widespread treatment availability and what are the obstacles to that end. We realize that it would just be an educated guess based on your background in the research field.

    For those of you looking for a place to share your experiences as a low vision individual, feel free to visit our “Zoomed In” blog. I discuss technology, parenting, working, and daily living from a low vision perspective. http://www.aisquared.com/blog

    Maurie HIll

  30. justyna says:

    Hello!

    Im so happy about this blog!!. I have 5 year old daughter, with LCA, type of the gene is CEP290.Do you have any information about this specific gene? Ther is many iformation about other type of LCA but nothing regarding CEP290.
    Thank you

    Justyna Wysokinska

    • EyeOnTheCure says:

      Hi Justyna,

      We are funding the development of CEP290 gene therapy through a grant to the Universities of Pennsylvania and Florida. It is still at an early stage. We need to do more lab work before it is ready for a clinical trial. But stay tuned for updates.

      FYI: CEP290 is a gene associated with cilia, which are tiny tube-like structures within rods and cones that work like a conveyor or transport system for delivery of critical proteins and other important substances. Defects in cilia-related genes are actually the cause of several types of retinal degenerations including some forms of RP and Usher syndrome. Cilia are an important target for our researchers in the development of many treatments.

  31. Zuby says:

    Please, does anyone know how a patient suffering from
    Stargardt’s can participate in the ACT clinical trials ?
    I have contacted FFB, ACT, UCL, London and UCLA, and I
    keep getting the run around.

    Thanks.
    Zuby

    • EyeOnTheCure says:

      Hi Zuby, you can visit clinical trials.gov and search all the listed trails by specific disease there. Each listing will indicate the status of the trial and provide you with information on how to contact those who are conducting the study for more information.

  32. Paul Smith says:

    Hi all

    Can anyone shed and light on any research or specialists in the area of CXLRS (Congenital X-Linked Retinoschisis)?

    I hear lots of talk around gene treatment, which is very exciting! – I am assuming that this research will also hopefully have a positive impact on CXLRS treatments?

    I am in the UK and although I do understand CXLRS pretty well (I am not a Doctor mind you :) , we have one of the top consultant in the UK treating my 5 year old son. Finding like wise people/children with the same condition is proving very difficult. CXLRS can be quite unpredictable, long term prognosis is extremely difficult with so many gene mutation types around the RS1 gene – my sons eyesight could be ok for many years, however, in the past 8 weeks he has had 3 vitreous hemorrhages (2 in his left and one in his right eye)- although RD’s have been ruled out, I am still concerned that the condition is becoming more active, and I suspect that the VH’s may possibly indicate that his retinal layers are splitting some more; subject to a OCT scan by his consultant in March this year – once the blood spots have cleared up in his eyes.

    I do know from the initial OCT scan about 2 years ago, when he was first diagnosed, that his right eye retinal layer appeared generally ok, but the left eye showed small splitting (schisis) in the retinal layer (it was a VH that first alerted us that something was wrong 2 years ago).

    The 2 recent VH’s are compromising his ability to read and write in school effectively (he is only 5), so I am now putting in place support from the local authority ‘low vision clinics’ as a precaution – once the blood spots clear from the VH and subject to visual tests and examinations, I am hoping that his visual acuity isn’t compromised too much.

    if anyone out there has any additional information around research, or indeed if there are any other CXLRS suffers, i would welcome the opportunity to share experiences and knowledge – much appreciated :)

    I realise that my son is one of millions of people/children with a degenerative eye condition, but just being able to use this blog is a real help, and when you read some of the stories/posts on this blog (albeit only just stated) …you realise how lucky you are compared to some people and the courage/fight that they show .. my thoughts and prayers are with you all ;)

    Paul …in the chilly UK :)

  33. Adriana Vincentelli says:

    Dear Steve and supporters

    Thank you, thank you, thank you all for this wonderful blog.
    I´m a 59 year old Venezuelan with RP diagnosed about 20 years ago. I´ve being supporting the FFB when ever I can and wil support it as long as I live.
    People like you give me hope and strenght for living.
    God bless you all
    Adriana vincentelli

  34. Eye Floaters says:

    Any known cure for eye floaters out there?

    • EyeOnTheCure says:

      Thanks for posting. I’m afraid eye floaters is not under our umbrella of expertise as our focus is retinal degenerative diseases. There is some information on eye floaters that can be found here on the Lighthouse International website (http://goo.gl/k7mvb). I hope that you find it helpful. After checking out your own site, it looks like you may be the expert on the condition! Thanks again for commenting

  35. Lisa says:

    thank you Steve for starting this blog. I am the parent of two young men who both have CRD. The oldest is legally blind and the other is borderline, visually impaired. Extremely interesting in all of the progress in research. It’s so hard for them to not be able to drive.

  36. I am only commenting to let you understand of the great experience my wife’s daughter enjoyed browsing your web page. She came to find some details, including how it is like to have a great coaching character to let many others without difficulty fully understand a variety of grueling subject areas. You undoubtedly did more than visitors’ expectations. I appreciate you for showing such beneficial, trusted, explanatory and even unique tips on the topic to Jane.

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