Listen to this page using ReadSpeaker

My Race to Cure Blindness

Michael Stone in a bike race Although a disease called cone-rod dystrophy has rendered me legally blind, I’m known, in certain circles, as a world-class triathlete. I swim as well as bike and run (often on mountain trails). I began competing before my vision deteriorated, and I’ve since learned to use my other senses. In fact, I like to think of my feet as my eyes. I take an awful lot of steps, and I don’t land heavily. If I’m on a trail and step on something that doesn’t feel right, I hop off, then move quickly forward. It’s usually on the run where I beat my competition.

But you know what? I can no longer shop for groceries.

Before I explain why, I’d like to mention a book I wrote and published two years ago. It’s titled Eye Envy: Perspectives Into Vision Loss. And while it tells my story, it also features the stories of more than a dozen other people, of various ages and walks of life, affected by retinal diseases. They’re among the hundreds I’ve met in my travels worldwide, as a triathlete, coach, speaker and fundraiser for the Foundation Fighting Blindness. In fact, the proceeds from the book—which you can order, in print, on my website, or as an e-book—go to FFB.



I got involved with the Foundation almost 10 years ago, after I’d been diagnosed with cone-rod dystrophy at the age of 35. Before that, I knew that I had vision problems, but it wasn’t until I hooked up with Dr. Gerald Fishman, a Foundation-funded researcher and clinician, that I discovered the cause. Since then, I’ve dedicated not only my book sales to FFB, but I’ve co-hosted fundraising events in both Florida and Chicago with my parents, and I co-founded the Race to Cure Blindness program, through which athletes leverage their competitions to fundraise for FFB.

I wrote Eye Envy for a couple of reasons. In every way possible, I want to help FFB raise the considerable amounts of money necessary to fund the lab, pre-clinical and clinical-trial work aimed at providing people like myself with treatments and cures. My younger brother, Russell, has also been diagnosed with cone-rod dystrophy. And our paternal grandfather, once a larger-than-life Chicago attorney who loved driving his Cadillacs, playing golf and watching the Cubs and Bears — we watched him deflate in his later years, as the effects of age-related macular degeneration robbed him of his sight. He died just two months before I ran my first race for the Foundation, in 2005.

Now, I’m not married, and don’t have children, but I have five nieces and nephews. And these diseases I’m talking about — they’re hereditary. So, yes, in many ways I’m doing this for myself and my family.

But I also wrote Eye Envy because, over the past decade, I’ve met truly inspirational people who, despite their conditions, live fulfilling lives. And, like me, they once experienced the loneliness and despair that accompany a retinal-disease diagnosis. More than anything, you need to know you’re not alone, and my book is a means of offering the support so many of us need. And for the sighted community, it hopefully provides both inspiration and a glimpse of the low-vision world.

So, back to the groceries. When I wrote Eye Envy, I had some trouble with daily tasks, but not much. A few years earlier, in fact, I was able to drive. My vision, however, has deteriorated significantly in the last year alone. Even in optimal conditions, my vision is twice the legally blind limit.

So shopping in a grocery store — trying to get around others, seeing signs, reading labels — is no longer possible. An Ironman competition is easier for me to navigate than a Whole Foods. And because I live by myself, I have an assistant do it.

Food shopping is just one of many tasks that have become difficult for me. So I’m more determined than ever to help fund treatments and cures. But I also consider myself fortunate. Without this condition, I would not have met many of the people I have and made the same kinds of deep, meaningful connections.

I’m also confident enough in FFB’s abilities that I can imagine the following happening in my lifetime – an eye doctor, after delivering a diagnosis to a patient, saying, “OK, this is what you have. And this is what we’re going to be able to do for you.”

26 Responses to 'My Race to Cure Blindness'

  1. Antino Knight says:

    Thank you for being an inspiration. I was diagnosed with rod cone dystrophy about a year ago. To me it seems to be progressing fast and I have to adjust each step of the way. How did you deal with it in the beginning?

    • EyeOnTheCure says:

      Thank you for reaching out, Antino!

      I was diagnosed when I was 35 (I am now 44). At first, I was in utter shock, but with a sigh of relief. I struggled through life being misdiagnosed. To have a reason why I could not see better was a relief. However, I was also in a major state of denial that this was a degenerative disease. Perhaps I didn’t hear the doctors correctly, as there were three of them sitting in a very small room. Perhaps they didn’t explain the degeneration correctly. But the initial feeling of shock was primarily a sentiment of acknowledging a long and difficult past. I was not looking to the future of greater vision loss.

      Even if I had, I am not certain, nor were the doctors, what that would mean, as they gave me a range of vision loss. On the lighter side, I would be legally blind (whatever that meant) to totally blind. However, that wasn’t told to me until almost two years after my diagnosis. That was the beginning. I really didn’t do anything to adapt, other than a lot of fundraising. I just acted, as you suggested, by “adjusting each step of the way.” This had much to do with writing my book Eye Envy.

      What I do now is far different. I still adjust each step of the way, but my education is far greater. I will say that I would have done some things a little differently during those initial years, but the truth is, dealing with the emotional process was far greater. I had put my time and energy into “what I can do versus what I can’t.” In fact, I really didn’t focus on the “can’t” part at all. This hurt me a bit in my everyday life, as many of life’s tasks became very difficult.

      It would seem that not only was I confused by what the future held, but those around me were even more so. There were adaptive techniques that I could have applied immediately, in an effort to make the rapid sight loss that was to come much easier. I now try to be one step ahead of the sight loss.

      I would happily share the specifics of this if you would like to reach out to me directly. You’ll find a contact link on my website ( For now, I wish you well on your journey, and, as I said, I am more than happy to help you through it. Warmest wishes, Michael.

  2. Jim beaver says:

    I have had rod and cone dystrophy for 18 years. The disease progressed just so far and stopped. My eye doctor glued a magnification lens (x7)to the right eye of my glasses. I read quite extensively with this (my left I closed). It works pretty well. Good luck.

  3. Tupac says:

    Heya we are for your primary time below. I stumbled upon the following panel and that i in discovering It genuinely helpful & the item helped me away lots. I hope to make available one important thing rear plus guide other people just like you forced me to be.

  4. dian says:

    hi,I was diagnosed with rod cone dystrophy about 5yrs ago when I was 19 yrs old. althiugh it was very diffecult, I’v graduated this year with very good gpa . because of my condition many companies did not accept me although i did very well in the interviews. it takes alot to overcome it and to accept it. I have a brother who is younger than me and now he is first year student. he could not focus in his study and he is very depressed. i dont know how to deal with that.
    please help with that.

    • Eye on the Cure says:

      We focus on research for retinal diseases and do not have much to offer on lifestyle resources. There are definitely organizations out there that can provide you with information though. Here are a few:
      Job Accommodation Network. This group focuses on providing the resources and information for those with disabilities to be productive and work.
      American Foundation for the Blind can also be helpful in this area.

      Also try:

      Lighthouse International

      Nation Federation of the Blind

      We hope these resources can point you in the right direction. We wish you and your brother all the best.

  5. Just wanted to say what an inspiration it is that you do what you love! I have always loved photography and have decided to not give up on it despite being a visually impaired person and having cone dystrophy. I am lucky as my sight is stationary at the moment and I am very lucky that my hearing, being very good, compensates for my bad eyesight. I am worried about it deteriorating a lot further but I think that I want to try to enjoy my life as much a I can before I can see a lot worse. I have been very lucky also to have an amazing family and boyfriend to support and encourage me which I find is my best motivator I suppose. I hope they find a cure soon. I find cat 4 sungalesses the best for me and couldn’t get about without them!

  6. Kathleen says:

    Thank you for the inspiration! I found this by googling “retinal dystrophy cure.” I was recently diagnosed with macular dystrophy and told “but don’t worry-you won’t even start noticing any vision changes for about 5 years” by a University retina specialist! I immediately noticed visual deterioration, again got a pat on the head from the same doctor, and went for a second opinion to a regular ophthalmologist where I was told I may have a retinal dystrophy.Now waiting for an appt. with another retinal specialist. Needless to say, this is a devastating diagnosis. Though not a true athlete like you, I have always been active with kayaking, hiking, and working in my profession. It helps to hear that my life will not be over, because I keep feeling like this is a terminal diagnosis. It’s not. I want to be as independent as possible. I don’t know how I will learn to do that. What or who helped you the most in learning to navigate life? For instance, how did you find an assistant? I will definitely get your book, thanks for writing it.

    • Eye on the Cure says:

      Hi Kathleen,

      Thank you for your comment. We encourage you to reach out to Michael directly through his website. There is a “Contact Me” section where you can pass along your questions and concerns. I hope this is of some help to you. Please let us know if there’s anything else we can do.

  7. kathy maloy says:

    hi my name is Kathy and I was diagnosed with cone rod dystrophy at the age of 40 and now I am 50. My eyesight has gotten much worse within the last year. Everyday tasks are getting challenging. I can’t drive anymore. It is very hard to read and I know it will come to a time that I won’t be able to read at all. you see my mother has that same disease and I see the problems she has. I also have a hearing problem which makes things a little more challenging. I am hoping that they come up with a cure sooner than later.


    • Eye on the Cure says:

      Hi Kathy,

      Please continue to check the Foundation homepage and our blog for the latest updates on retinal disease research. If you have a specific question, please contact We wish you all the best.

  8. Francey says:

    Thank you for your inspiring article. I am the mother of two sons with Cone Rod Dystrophy. My son is 47 and has been advised to have cataract surgery. Neither doctor can assure him that this trauma to the eye will NOT exacerbate vision loss, both doctors feel the removal of this cataract (which has been slowing growing for 25 years) will help improve my son’s vision, which is very, very poor due to cone/rod dystrophy and now further compromised by these cataracts. Can you, or anyone who has posted comments to this site, shine any light at all on cataracts/surgery and results positive or negative as a result of the surgery? My son has been legally blind since birth and was diagnosed at the very young age of 7 with CRD. His attitude is and has always been fantastic, regardless of the many monumental challenges facing him at every turn in every stage of life. I’m very proud of him, he is my inspiration. Our family tree has produced not a single case of CRD, my husband doesn’t have it, nor do I. Good luck to you, Michael and to all who have posted such inspiring comments to this site. I feel so lucky to have found this site and Yes, I will be buying your book and look so forward to reading more of your exciting story. I will also tell my son about you. Thank You.

  9. Robin says:

    This response is for Francey. Like your son, I have been legally blind since birth…not due to cone-rod disease but because I contracted toxoplasmosis in utero and it destroyed the macula in both of my eyes. I’m 54 years old and had cataract surgery a year ago because the cataracts were interfering with the limited vision that I had. The outcome has been horrible…a nightmare. My ophthalmologist was so convinced that after the surgery I would have better vision than I’ve ever had but it turned out the opposite. They were all perplexed when they realized my vision was worse. It was only by doing a lot of research online that I found out that there is a powerful connection between the eye and the brain and in cases where a person has been blind or functionally blind since birth, the eye and brain don’t work so we’ll together after cataract surgery or any surgical attempt to “correct” their vision. And…big surprise…when I presented my Dr. with my research, she said “Yes, this makes perfect sense and explains what’s going on with you.” Follow this link to read some of what I found out.

    I’d give anything if I’d known this before my cataract surgery. I realize that the cataract needed to be removed but the discussion with my doctor would have gone differently. I’d have insisted that they not implant a lens that would “correct” my vision but one that would keep it as it was…minus the cataract. I hope this helps.

  10. Shaun astley says:

    I have been diagnosed with rod cone dystrophy and im 22years old they have took my driving licence off me. I have a daughter who is 2 this week, i was working in a wearhouse but had to stop working because of health and safty reason. I just dont know what to do anymore my heads everywhere i loved driving and mounitbiking but now i cant get around to be able to go out on my bike :@ just feel like giving up. :,(

    • Jodie says:

      I have Cone-Rod Dystrophy too. Don’t give up. Having this eye condition makes life more challenging and you will find a way. I had to give up my license too and my daughter was three at the time. I was a full time college student at a 4 year university. I just earned my bachelors degree despite having this condition. If you are in the United States, Vocational Rehabilitation might be a good a resource to check into. I don’t have it all figured out either yet but I am working towards my goals. I am not sure how fast your vision has degenerated but I still ride my bicycle. Many cities have programs to help people with disabilities to travel at a cheaper cost such as cheaper taxi rides. Public transportation is also not very fun at first but now I am used to it and I am thankful to get out of the elements when the weather is bad. It takes some adjusting but maybe you can look into some resources in your city that might the transition a little easier. Giving up the driver’s license is hard and I completely understand how frustrating that is. It changes how we do everything. Your not alone and don’t give up either.

  11. Tanu says:

    What an inspiration you are! My nephew who is 14 years
    Is diagonosed with cone and rod dystrophy .
    He is really keen on taking science and biology as his
    Subjects of specialisation but most of the people are
    Discouraging him looking at his condition.
    how far has the research
    In this field has been successful what are the chances
    That young kids Who are suffering from this
    Condition will be able to see light at the end of the tunnel

    • Tealeaf says:

      To Tamu
      I’m a 50+ woman who was diagnosed with cone rod dystrophy at 38. I taught High School. I love science too! Don’t be afraid to encourage your nephew to follow his love and interests. The ideas and subjects that are “juicy, ” that give us delight and lead us to ask questions are where we bloom. This kind of growth is never wasted or lost!

      Every day you have the vision that you have. This is true for all of us. Remember that the progression of this disease is very individual. His vision may be just fine for what he desires to achieve.

      As I write this, I am currently juggling three books in various digital and audio formats on the subject of neuroplasticity. That is my joy. I have friends who are completely blind who are computer programmers.

      Probably what others are thinking of are lab classes. And yes that can be a problem; but is it really for HIM? Right now, Today, when he is taking the class? Is it possible to hire a lab buddy? An older student assistant who can tell him where the minuscus is?

      The sciences have many uses and are not limited to the laboratory. His mind is much larger than any laboratory.

      It is sometime difficult to not let others assumptions and fears of what we are experiencing stand in our way. Especially when we are young and the adults seems to “know,”or when we are parents trying to listen to experts to understand what is the best for our child; but know that only your nephew can know what he can and can’t see.

      It is important to realize that there is a amygdala, “reptilian brain” sub text here: many years ago, I read that brain scans of people shown different pictures demonstrated that the three images that got the strongest fear results were, fire, snakes and threat to the eyes. All people when faced with the subject of blindness, even when it is the blindness of another with have this response. Be cautious of well meaning advice from people who have not faced this challenge and experienced victories, giving advice about limitations. This underlying fear might be unconsciously at play in their well meaning advice.

      A possible future is just that: the future – unknown. Today We See. Today he dreams, today he is curious. The joyful learning of today will take him on a good path.

      Best Wishes,

  12. heather says:

    my son is 8 and just diagnosed with cod-rod dystrophy. i know nothing about this. he wears glasses, sees well in school, has color issues but my father is color blind so not sure if it has to do with diease or my father. any info would be greatly appreciated 🙂

    • EyeOnTheCure says:

      Approximately 50% of all cone-rod dystrophy are caused by mutations in the ABCA4 gene, the same gene that is involved in Stargardt’s disease. If your son has this gene mutation, then he could qualify for the ABCA4 gene therapy trial that is currently recruiting patients in Portland, Oregon and Paris, France. It should only take a month or two to find out if the ABCA4 gene is involved. If ABCA4 is not involved, then it could take months to years as many of the remaining 50% of recessive cone-rod dystrophy genes are unknown. You may also want to try to identify the disease gene/mutation for your son. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what, if any research is being done. Your son may also be able to qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      Whether you identify your disease gene or not, you should consider participating in FFB’s “My Retina Tracker”, a free registry that can help you find out about clinical trials that are recruiting for your specific disease. For more information on “My Retina Tracker” please see the following web link:

  13. Jodie says:

    I also have Cone-Rod Dystrophy and my father, sister, nephew, uncle, late grandfather, many cousins and some distant relatives also have Cone-Rod Dystrophy. Despite my vision loss, I love running long distances and so I ran in my first 5k race in 2013. It was the best experience even though I could not see the people cheering me on. It was empowering and exciting to run in a race and I never stopped running the entire time. I ran the race in 32:55 which I was really proud of. I plan to start back at the gym and train for some spring races. I really would like to start running races and raise proceeds to donate to research for CRD. I was diagnosed at 17 years old and I am now 31 years old. The type of CRD I have slowly degenerates over time but eventually, I will become blind or close to being blind like my older family members. I just finished my bachelors degree and I am carving out my next journey. How can someone like me run for charity and awareness of CRD ? I want to slowly build up my race lengths and eventually do marathons. I have been researching this condition for over 10 years now and I would love to put my distance running to good use. I could use any advice anyone has on starting this journey. When I advocate about my eye condition, many people do not know that Cone-Rod Dystrophy exists. I would like to increase awareness of CRD and help researchers progress further in finding a cure.

    For those who are just being diagnosed or for those who have questions on CRD, I am happy to reply to you on this thread.

    Thank you so much for reading this and I appreciate any replies!

  14. alana bonacker says:

    Thanks for supporting this cause, i dont know if anyone will read this but my situation is unique to many others with retinal diseases. Im 25 years old, ive had cone dystrophy since birth and was diagnosed when i was around a year old when my parents started noticing that i had nystagmus in both eyes. Although ive lived a relatively normal life besides my profound vision impairment, as an adult i struggle with driving and anticipate giving up my license in the next 5 years. I honestly dont know what im going to do, im really hoping my vision doesnt ddeteriorate as i get older. I can also relate to the loneliness and despair you mentioned of having the condition, those words pretty much nailed it. No one else in my family, living or dead, has retinal problems whatsoever, so ive felt misunderstood even by my own siblings, people just plain dont understand the concept of my vision loss, that its not as simple as i cant see far away or that glasses arent a simple fix for me.

    • karin says:

      I am 40 years old and also diagnosed with CDR. Like you i am the only one in the family and also i feel very little understanding for my visual situation. Its really not easy to accept the impairment.

  15. dena swords says:

    About 2 years ago i was diagnosed eith Rod Cone Dystraphy. with this diagnosis i have come to know that it is dificult to deal with what i have. when i was little i was able to play games on a computer, game system, or games outside like football softball and different games in the sort. Now the onkly way i can really search on a computer is if the computer is inverted to where the background is black on everything and the letters are yellow or white. If i play a game on a game system i will have to play the game for a while just to let my eyes concentrate on the game and then i will play the game well. If i go outside i need to wear sunglasses because the sky and sun and light is to bright, if i dont have sunglasses then i will get a migrane because my eyes are hurting from it being to bright. I cannot drive or see thinga clearly, if i am walking down the road with someone i wrap my hand around the other persons are which helps me to walk straight ( with my arm or hand around someones else arm they are basically my eyes for me by me just holding their arm). I have went to # different doctors 1 in UAB which he said that i would soom become blind. 2 doctors in Dothan AL. Dr. Arango and Dr. Denny, they both said i will not lose my vision, that my youth is in my favor. Dr. Denny has examined my eyes this past summer of 2015 and has made glasses for me. these glasses that Dr. Denny has perscibed to me work very very good. At night is the best i can see because everything stands out and thee sky and sun are not bright to me because its night time. with the glasses i am able to drive very well because the glasses hekp me see far away i am able to see signs the road lines and everything .. I am so grateful to atleast have glases that help me see even a tad bit better. I am still falowing my dreams with or withouth my dystraphy, i have been accepted to Universal Technical Institute to train to be a diesel technician. i bless the lord for my vision because if i nver would have ben diagnosed with this vision i wouldnt be the person i am today. i thank my family an friends for helping ,e through all the tough times and bruises in my life lol. ( i run unto everything and i bruice very easily) but i will always pray for a cure to be found, not just for myself but for others that have the dame rod cone dystraphy as i.

    • Hal Schmulowitz says:

      I have had cone dystrophy for years but it really started to get bad 6 years ago. I am 56 now and had to stop driving 3 years ago. I am a firm believer in using colored filter shades, notably the ones made by noIR. i find a red/orange or a red to be the most beneficial. I will wear those over a pair of sunglasses. I have a light and dark pair and will use whatever combination fits the lighting. it is always changing and needs adjustment as my eyes get worse. What glasses are you using? I believe that technology, staying fit and keeping the mind shape are the keys to dealing with this disease.

  16. karin says:

    The comments on this site are very hekpful to me. I am 40 years old and found out i have CRD a view months ago.

Leave a Reply

Your email address will not be published. Required fields are marked *