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UCI Stem Cell Pioneer Poised to Launch Clinical Trial for RP Patients

Dr. Henry Klassen, a Foundation-funded researcherHenry Klassen, M.D., Ph.D., is only about a year from launching a clinical trial for a stem cell treatment to rescue vision in people with retinitis pigmentosa (RP) and, potentially, other retinal diseases. At the Foundation’s recent Orange County Innovation Symposium, the University of California (UC), Irvine clinician-researcher reported that he and his colleagues are in the midst of final lab studies with patient-grade cells. Once finished, they’ll request authorization from the U.S. Food and Drug Administration to begin their human study.

But Dr. Klassen’s 35-year research journey to this pivotal moment was by no means conventional, nor was it embraced by many of his peers.

“During medical school at the University of Pittsburgh in the late ’80s, they thought I was crazy for getting a Ph.D. in addition to an M.D.,” he says. “That’s because, with a medical degree, there was nothing standing between me and an excellent income.”

He received similar criticism when he went from Yale, where he did his residency, to Moorfields Eye Hospital in England for a post-graduate fellowship. He passed on becoming a high-paying retinal surgeon because “the need for doing more research was reinforced when I saw the retinal degeneration patients,” he recalls. “The diagnosis was a grim message to have to deliver. I decided to concentrate on the research and come back to the clinic when I had something more to offer to patients.”

It was in the lab of Ray Lund, Ph.D. — a leading cell-therapy innovator who’s received Foundation funding — where Dr. Klassen first saw the potential for cell transplantation to restore vision. “When I got to Pittsburgh, I learned that Ray was doing retinal transplants and had showed that retinal grafts transplanted into the brain survived, and there was some integration,” he says. “That really thrilled me, so I joined his lab.”

Those early retinal graft experiments — before stem cells could be made into retinal cells — were technically difficult and tough to translate to humans. But they showed that transplanted retinal cells could connect to host neural tissue. Most important, they laid the groundwork for future retinal transplantation strategies, including those using stem cells.

In the 1990s, in collaborations with Dr. Lund and Michael Young, Ph.D., who was then at M.I.T., Dr. Klassen began making game-changing advancements in transplanting retinal cells into the eyes of rats with retinal degenerations. “As I’m looking through this microscope, I’m seeing something I never expected — a transplanted cell that could migrate through adult neural tissue and find its way to the right spot, park and start extending new connections into the host circuitry,” he remembers. “It was amazing. It was the breakthrough I’d been looking for.”

That was also about the time when he received a Career Development Award from the Foundation, to help advance his research. “I had seen a flier from the FFB when it was known as the RP Foundation. It was exciting to find an organization that was doing exactly what I wanted to do,” says Dr. Klassen.

Today, stem cell research for retinal diseases is blossoming, with several clinical trials planned or underway. Dr. Lund’s work led to the 2011 launch of Advanced Cell Technology’s human trial of a stem-cell-derived therapy for people with age-related macular degeneration and Stargardt disease. With support from the Foundation, Dr. Young is helping the company ReNeuron prepare for a stem cell clinical trial for people with RP scheduled to begin by early 2015. Both ReNeuron’s and ACT’s therapies involve injections of cells underneath the retina to replace those cells lost to disease.

Dr. Klassen’s forthcoming clinical study involves the injection of retinal progenitors — stem cells that have partially developed into retinal cells — into the patient’s vitreous, where they’ll release factors to preserve and rescue existing retinal tissue. He says that a benefit of his approach is that it doesn’t involve a more invasive subretinal procedure, which would be required if lost cells were being replaced. Also, his progenitor-based therapy has the potential to rescue a variety of retinal cells — including rods, cones, retinal pigment epithelium and ganglion cells — and, therefore, may save vision in people with a wide range of conditions.

After decades in the field, Dr. Klassen acknowledges that reaching this promising juncture wasn’t easy. “I have seen a lot of ups and downs with these technologies. It wasn’t like somebody invented one thing in their garage and everything was solved,” he says. “Finally, we are getting to the point where stem cells are poised to do something meaningful in the clinic.”

Pictured, above: Henry Klassen, M.D., Ph.D. 


121 Responses to 'UCI Stem Cell Pioneer Poised to Launch Clinical Trial for RP Patients'

  1. Marisa says:

    Dear Sirs,
    We are interested in your study. What shall we do to enrol?
    Thank you very much.
    Marisa

  2. Lizzette Hernandez says:

    Hello ,

    My husband and I are very interested in your study , pls let us know what can we do to be part of it …

    Thank you

  3. Nydia Mendez says:

    My granddaughter, Nydia Mendez, has had R.P. for twenty years and she is losing her right eye and the left eye is following. She lives in Camarillo, California and would probably be very interested in being a part of the stem cell clinical trial next year. Could you please send her information. Thanks.

    • EyeOnTheCure says:

      Nydia, We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  4. Kris says:

    As a person with rp I thank you for your hard work and studies on this terrible disease. Hope to see you in the future with the cure.

  5. umesh kumar agarwal says:

    wonderful hope for children and teenagers specially may god bless you and enlighten you more for the cause of humanity. thanx. umesh kumar agarwal, india, darjeeling

  6. Henry Bui says:

    Hi,

    I am a young university graduate who is entering into a pivotal part of my career and my life. My biggest set-back is having retinitis pigmentosa. It has greatly effected mine and my two brothers’ everyday quality of life (they also suffer from it). I would like to inquire more about these trials and hopefully be a part of it.

    Thank you so much for your time and contribution to the study.

    Henry Bui

    • EyeOnTheCure says:

      Henry, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for RP clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  7. Scott says:

    We are interested in your study. What do we need to do to enroll?

    Thank you very much

    • EyeOnTheCure says:

      Scott, We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

    • Brenda HUYNEN says:

      My son has Usher Syndrome. I would be so grateful to have him on the list for this trial

  8. sharon says:

    Question, are you working on a cure for rop My 14 teen year old daughter has it. You are all taking too long. I’m sorry but at this rate your at least 5 years away. I don’t understand why you can’t have more clinical trials on people who don’t have eyesight!!!!! There is nothing worst then not being able to see……… the children who live in the dark..

    • EyeOnTheCure says:

      Sharon,
      Unfortunately, ROP is not a disease that we specialize in funding research for. We would encourage you to check out the National Eye Institutes page on ROP. Towards the right of this page you will see a link for some information on organizations and institutes that focus on research and resources for ROP and those who suffer from it.

      http://www.nei.nih.gov/health/rop/index.asp

      Thank you.

    • Eric says:

      Telling them to “hurry up because they’re taking too long” is idiotic and completly greedy and rude. I myself have RP. And i would want nothing more then for there to be a cure so i can live my dream of being in the armed forces. But really? Based on your comment i can tell you have no level of Education about stem cell research. I work in a stemcell research lab for the University of PA and they work so hard everyday and all they think about is the millions they could be saving, it’s not as simply as “here lets just inject you with stem cells”

  9. Concetta Collemi says:

    This is such exciting news. My husband has RP and would love to be considered for this trial. Can you please forward me information once this is FDA approved. Thanks for all of your hard work!!!

  10. Jenny Dennis says:

    I have 5 degrees left in both eyes due to RP. I have 4 children, play the piano, and really misses driving. I get hurt a lot by running into things. Please include me in the study.

  11. Carol Quesenberry says:

    I would be very interested in information re participation in this study. Thank you.

    Carol

    • EyeOnTheCure says:

      Carol,

      We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  12. JS says:

    The article is very interesting, promising, and I would like to be considered as well for the upcoming human trial. Please advise on how one can participate. The only restriction for me right now is my vision restrictions via RP. Thank you.

    • EyeOnTheCure says:

      JS,

      We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  13. Dan Merchant says:

    very promising hope for the people with vision defects Hope that the life long mission of Dr klassen
    succsed and bring light in the darkness

  14. Lee says:

    Our son in law suffers from RP and it limits his daily activities and as a new father has also put a greater strain on our daughter because he cannot drive. Would like more info on this study and how he can participate please

    • EyeOnTheCure says:

      Lee,

      We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  15. Shilpi Mukherjee says:

    DEAR SIR
    PLEASE SEND ME MORE INFORMATION ON THIS.MY SISTER HAS RP AND WOULD LIKE TO KNOW IF SHE CAN TAKE PART IN THE TRIAL ETC.
    SHILPI

    • EyeOnTheCure says:

      Shilpi,

      We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  16. Nick says:

    I’m interested in your clinical trial as I am 38 and have RP.
    Could you please contact me when you have more information.
    Thank you kindly.

    Nick.

    • EyeOnTheCure says:

      Nick,

      We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  17. brenda says:

    I have rp terrible to know your gonna loose your eye sight iam very but very interested in your study thanks for restoring my hope for me n my kids what do i need to enroll.

  18. Charles says:

    Hey My Name is Charles Michael Turner im Am 18 years old and i will be turning 19 in august i was Diagnosed with RP when i was like 4-6 years old and ive always been scared of completely loseing my eye sight i have even cryed about it many many time because i fear the unknown and i would like to help by any means to help produce a cure for this Disease i attended L.S.V.I (Louisiana School For The Visually Impaired) for years and learned brail but i dropped out because of my eyes sight is pretty poor and i will never be able to operate a vehicle and it is my biggest dream to be able to get a drivers license i strugle alot trying to watch movies and play games and sometimes i have black outs to where im completely blind for 3-10 seconds and i get really light headed and it hurts i justy want to be able to get to 20/20 vision or at least be able to see well enough to drive i would really like to perticipate in this if you would let me my number is 774-634-7557 if you can contact me i would really appreciate it learning more about my eye deficiency and how to improve my vision please help me i would really be grateful

    • EyeOnTheCure says:

      Charles,

      We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  19. sky seace says:

    I am very interested in taking part in the upcoming clinical trial for RP (stem cell) I have RP and am considered to be legally blind from it now. My mother is almost completely blind from RP as well.

    please consider me for your trials I am willing to travel and stay for as long as it takes for the trial.

    Thank you,
    Sky S

    • EyeOnTheCure says:

      Sky,
      We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  20. claude daucet says:

    i have autosomal dominant retinaitis pigmenosis for the last 30 years and it increasingly getting worse. it is hereditary and i would very much like to be involved in your research study. I am very independent as i am building a garage but i would love to be able to see it and to quit hitting my thumb so much. lol (this is his friend Linda – you will never hear him complain and i try to help him as he stumbles. He is extremely ingelligent and works hard so people do not realize his disability. he is a very caring person who puts GOD first and truly loves the outdoors. Please allow him the opportunity to be in your study)

  21. Farah Rais says:

    I wish you the best of luck. What can we do to be part of this study?

    Thank you

    • EyeOnTheCure says:

      Farah,

      We would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  22. Ann Menegis says:

    My son is 21 years old and was diagnosed at age 4 with x linked retinal schizma.He lives a normal life but his poor vision does impact on day to day living. I believe there is no treatment available for him,but after reading your article on stem cell therapy wondered if there is any hope that it would help him in future?I think your research is just tremendous and has such a potential for really changing lives.

  23. Steven D. says:

    Thank you so very much for your spirited efforts. I lost the final shred of my eyesight to recessive RP some years ago, and have been reduced to a bit of mere light perception in both eyes; I was once an avid Astronomer & Yachtsman. From time to time I find myself touching my telescope or longing for the Sea, and nearly bursting into tears as I’m beginning to forget the wonders I once witnessed so many years ago. I keep moving forward, and am now preparing to enter Law School so that I may continue to do something meaningful with my life. If participating in your trial could return me to the world I once knew, I would appreciate the opportunity to do so.

    Ever travelling upon the level…

  24. Layla Wadrassi says:

    Hi

    I am 32 years old and have been told that I have RP. I fid it very difficult in bright conditions and I have had to give up driving. I am finding it very difficult to come to terms with the fact that I will los my sight as I have a daughter who I would very much like to see grow up. I like most of those that have commented miss being able to drive. I would like to thank you and your colleagues for your persistent hard work and research. You have given me hope and I am deeply grateful.

    Thank You
    Layla

  25. Greg Pearce says:

    Dr.Klassen.Hello my name Is Greg Pearce and my son Nathan has rp due to bardet biedl syndrome we live in fresno ca and I would love to get more info of your up coming study.Nathan is 14 and my daughter is 15 months and also has bbs.there defect is on the bbs1 gene.I don’t know if kids are allowed in your study or not but it would be a true blessing if they are.Im just a dad doing whatever I can to help my kids I tell my son to never give up that god will come through.i see god working through you and fellow researchers like you,may god bless all of your hardwork and thanks for all you do.

  26. Elisangela Vinagre says:

    Hi,
    I have a nephew that since he was born he had vision problems, and now he is 34 years old with just almost with no vision at all. As i was reading about your study i would like to know more about it if anyone can get back to me. Thank you
    Elisangela Vinagre

    • EyeOnTheCure says:

      Thanks for your comment Elisangela. Are you interested in being a volunteer for a clinical trial study?

      If so, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  27. Lauren says:

    My sister and I both have RP and would be interested and participating in the study. Please let us know when it is approved and what we need to do to enroll. Thank you.
    Lauren

  28. Vinay G says:

    I just came across this article. I have been regularly keeping up with FFB, but somehow missed this article. I have RP for quite some time now and am interested in participating in your clinical trials, if I qualify. Please include me and let me know. Thank you and God Bless!

    - Vinay

  29. Victoria says:

    My father has had RP my entire life. Both me and my sister were tested regularly since we were young to see if we also had RP. My father did not loose the majority of his eye sight until my senior year in high school. Right now he can only see light and shadows. I am not sure what the qualifications are for your clinical trial but I know that my father has been hopeful for a possible cure for RP. He has talked regularly about hearing about other blind people being apart of research and being able to see for various reasons. If you could please email me with the details of your trial and let me know what the qualifications are.

    • EyeOnTheCure says:

      Victoria, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  30. My sister(48 yrs old) and my brother (53 yrs old)both have RP. They are both interested in participating in Dr. Klassen’s RP clinical trail. Please contact me at the above email address. Thank You, Talita

  31. soma patnaik says:

    thanks for ur research work.let me know if can transplant my retina.i have rp.

  32. Grace says:

    Im so truly grateful for this research! Im 37 diagnosed with RP over 10 years ago.
    Loosing my eyesight gradually.
    Would like more information.
    Thank you for working so hard to find a cure to our eyes!

  33. Aleida Neira says:

    Hello Dr Klassen
    My three daughters 26, 22, 22 have RA, and very high myopia and astigmatism, we are very interest in the study.

  34. vicky says:

    hello, my name is Vicky, first of all, i want to thank Dr. Klassen and all of the other researchers that has dedicated there life to find a cure for blindness. I truly believe that god is working through you all. I am 51 years old and I have RP. unfortunately, RP has effected many of my family members, at least 18 or so family members. my son mother, brother, nieces, grandparents, two aunts, an uncle, and many, many cousins have struggled with the effects of R.P. I have ALWAYS BELIEVED that researchers would find a cure for R.P. I want to know more about this clinical trial for R.P. . I would love to be a part of the research that would possibly help so many of my family members to have a better life . Pease contact me concerning this trial study. THANK YOU SO MUCH FOR THIS HOPE!!

    • Paul H. says:

      Hi
      First thank you for all your work.

      My Daughter has RP and is down to circa 10 degrees in both her eyes. She tries not to let it effect what she does .

      We live in the UK and attend Morefields yearly. My wife / her mother is a GP.

      Please advise if it is possible to become involved with the trial.

      Many thanks and best of luck!

      Paul

  35. Ripen says:

    Hi Doctor.

    If you could succeed, you will be a god to many unfortunates like us. Just few days back my daughter was diagnosed with USHF1, which may lead to RP. She is noraml now and we donot know, how progressive it would be in future. Will be waiting for your announcement.

    All the best.

  36. Vijay Sethi says:

    Dear Dr. Klassen ,You are doing wonderful work for millions of people suffering from RP. I am from India, near New Delhi. My wife and her three siblings are suffering from RP and I am not sure about my children eyes condition who are ten and six years old. My wife is 39 years old and she is suffering from RP from last ten years. Her vision is getting deteriorated very rapidly in last two years. Can she be part of your clinical trial that I do not know, but surely if it is possible, we would like to part of it.

  37. Heather says:

    I am very interested in your trial, I suffer from severe RP and would be very interested in participating.

  38. Lynn Lyons says:

    Please send me information on how I can get involved in a clinical trial. I am quickly losing my eyesight to retinitis pigmintosa and would do anything to stop its progression. I am fifty four years old and have so much more I want to see. God bless you for your work in this area. I have had to watch my Dad lose his sight to this horrible disease and I recently found out that my son has it as well. My heart is broken for both. Please consider me as a canidate for any clinical trial you may have going on now or in the future. Thank you Dr. Klassen for your dedication to this disease.

    • EyeOnTheCure says:

      Lynn, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  39. Jemond Smith says:

    Hi, my son was diagnosed with RP at 5 years old and is now 7. His uncle (his mothers brother) was also diagnosed with this condition at birth and is now 24 years old. It wasn’t until my son was diagnosed that we found out this is a condition that is genetically inherited, however we now have two sons. The youngest is 3 years old and we have not had him checked to see if he has RP. Our oldest son is currently getting checked annually by a specialist who’s a part of Baylor Medical Center and is on a board primarily focused on this condition.

    Please advise if there’s something we can do to have our son participate in your clinical study.

    Thanks for your dedication to find a cure for this condition!

    • EyeOnTheCure says:

      Jemond, we would recommend that you visit http://www.ClinicalTrials.gov. We fund many clinical trials but do not operate the studies ourselves and so reaching out them directly may be the best way for you to find out more about where they are happening and if participating is an option.

      On twww.ClinicalTrials.gov, which is maintained by the National Health Institute, you are able to search for clinical trials by searching based on your disease. Each clinical trial listing will tell you more about what the study is about and how you can contact them to see if they are recruiting and what the participant criteria may be.

      We hope this information is helpful and encourage you to contact us for additional help at info@fightblindness.org for further information if needed.

  40. Rubi says:

    My 36 year old husband and
    father-in-law both suffer from RP . My husband was diagnosed at a very young age and would want to be part this clinical trial. Please inform us with what to do..
    Thank you for your extensive dedication to finding a cure for RP.

  41. mahtab says:

    Hi
    i am 26 years old. i have retinitis pigmentosa. my peripheral vision has been destroyed. i have a central vision. Im suffering from this disease. i sent my medical reports for you.
    Thank you for your extensive dedication to finding a cure for RP.

  42. K.Prakash Rao says:

    Hi,the outcome is quite thrilling.Hats up to u.My son is having low vision due to retinal defect with high myopia.The news has kindled a ray of hope.Let the almighty help u in achieving the goal so that crores of people can see the wold.
    Ready to participate in ur noble work

  43. Michael says:

    Fantastic to see such progress in the world of RP.

    I’d love to find out more and also learn what I can be doing today to best position myself in the future for an appropriate trial.

    I have RP, currently being tested for Ushers Syndrome, and am based in New York but can get to London easily. Whilst regaining pheriphal vision would be amazing, just restoring my night vision would be life changing in itself.

    Would also love to learn more on how I can help.

    Thanks for your time and keep up the great work!
    Michael. M

    • EyeOnTheCure says:

      Hi Michael,

      Thank you for your kind comments. You should first try to obtain a molecular diagnosis to identify which of the 13 Usher Syndrome genes are mutated. For information on genetic testing please see link to an excellent information booklet on genetic testing: http://www.blindness.org/foundation-publications-inheritance-and-genetic-testing
      To increase your chances of getting into a clinical trial, you should consider enrolling in “My Retina Tracker”. My Retina Tracker is a free on-line registry provided by the Foundation Fighting Blindness as part of its mission to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of inherited retinal degenerative diseases.

      My Retina Tracker is designed with state-of-the-art database technology to protect your privacy. Data in the Registry is only accessible to the participants, the Foundation Registry staff and appropriately qualified researchers who have applied to the Foundation, through a rigorous scientific review process, for access to the data for research or to help accelerate clinical trial enrollments. For more information, see the link: https://www.myretinatracker.org/

  44. Santiago Rivoir says:

    My father was diagnosed with RP almost 50 years ago, rate now his vision is very limited, what do i need to do to enroll on this clinical trial.
    Thanks for all you are doing!!!

    • EyeOnTheCure says:

      You should have your father contact Dr. Klassen at:

      Henry Klassen, MD, PhD
      phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  45. God bless and god speed to you and your research team.

  46. yasir saleem says:

    hy there> I read your article and am interested to be a part of your study research on RP. I am also having RP and would highly apriciate you to consider me in the clinical treatment.
    thanks alot

  47. Felix Cruz says:

    Dear Dr. Klassen, Sept. 11, 2014

    I just read your article about your coming clinical experiment on patients with RP. My wife, Lourdes, is legally blind due to RP. We are very excited and hopeful and we thank God for what you and your colleagues are doing. Please contact us on this email as soon as your clinical experiment is FDA approved. We would also like some more information and how to be part of your clinical research.

    Thank you and God bless. Felix

    • EyeOnTheCure says:

      Hi Felix,

      If your wife is interested in participating in Dr. Klassen’s stem cell trial, she should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

    • EyeOnTheCure says:

      Dear Felix,

      If your wife is interested in participating in Dr. Klassen’s clinical trial, she should contact him at:
      Henry Klassen, MD, PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  48. Bo Nguyen says:

    Hi,

    My first cousin suffer from this RP disease for a long time. She would like to know more information and how to be part of your clinical research. Please contact us as soon as FDA approved. Thanks

    Bo

  49. john Beavers says:

    My wife and I pray that you will find this cure that you are looking for.
    We have three children with RP., so we are very interested. we are being treated at Iowa city by Dr. Stone , who is very good to us but seems to be behind your thinking. I”m sure yu will have no shortage of volunteers but we are available if you need volunteers from different parts.of the USA

    • EyeOnTheCure says:

      Dear John, Glad to hear your children are being evaluated by Dr. Stone. He is one of the best RD retinal specialists in the world. If you can identify the gene mutation, there may be chance they could benefit from one of the gene therapy trials that is currently taking place. Our thoughts and prayers are with you!

  50. Jeremy Bing says:

    Thank You for your hard work on trying to defeat RP!! You give us RP patients something to look forward to I am losing vision in my right eye now my left is mostly gone I hope to see you soon Dr!!

  51. Jay says:

    I’ve had rp for over 30 yrs. I’m 43 now and have a twin that has it too. My central is 20/25 and my visual field is 5%. I just went to my opthamologist and he told me ucsf with Jackie duncan is recruiting for the clinical trial drug that stops the rod/cones from dying. I would like to be in your clinical trial. I didn’t qualify for the one with duncan because my retina pictures showed slight swellen in the retina which disqualified me from her study.

  52. nikhil gulati says:

    I have been diagnosed with rp . I am losing my vision , I am very hopeful and glad with the opening g of such clinical trials , hope it could prove to be a wonder for people like me . I would like to take this treatment , kindly send me the procedural details .

  53. Maile says:

    Where do I sign? This is debilitating and needs a cure. The gene my RP comes from also caused a neurological disease that took my son’s life (Leigh’s Disease). I’ve been through enough. I want my life back

  54. Lyndol W. Hollingsworth says:

    I have been dealing with RP for more than 30 years. Although I have been able to slow it down by eating a healthy diet and taking supplements, I would love to get back some of my lost vision. I would be honored to be a patient in your upcoming clinical trial.

  55. Kelly Hogan says:

    My name is Kelly and I am 50yrs old with RP and less than 10 degrees visual field. My mother has RP as well and is completely blind. I am very interested in your clinical trial. I am not looking for a miracle to restore all my lost sight but I am hoping to save the sight I have.
    Thank you for all work.
    Kelly Hogan

  56. Jamie Voss says:

    I have RP and it is getting worse – I was diagnosed last year. I am 48 and have never been able to see in the dark. Finally our hometown eye Dr saw this in my exam. I have been examined at U of M in Michigan, and they all say “sorry, there is nothing that can be done.” My husband has Huntington’s Disease and is going to need me and I’m worried I won’t be able to help him. Please if there is room in your study, could you contact me? Thank you!!

    • EyeOnTheCure says:

      Dear Jamie,

      There are three main types of RP: recessive, dominant and X-linked. If you are not sure, you should ask your ophthalmologist which inheritance form of RP you have. Please see the following web link to download a PDF document containing information on inheritance:

      http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf

      You may also want to try and identify your disease gene as there are already several clinical trials for RP that require a molecular (genetic) diagnosis to participate. Currently over 50 genes have been shown to be involved in RP. For information on genetic testing, please see the following web link to download a PDF document:

      http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf

      Finally you should also 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:
      https://www.myretinatracker.org/

      I hope you found this information useful. If you have additional questions or concerns, please feel free to contact me.

      Sincerely,

      Tim Schoen, Ph.D.
      Director, Constituent Communications
      Foundation Fighting Blindness

  57. Himashu Khetani says:

    Very interested to hear about this trial and also to thank you for all the commitment you’ve given to this cause. As an RP sufferer for many years, I’d be very interested in enrolling and would be pleased to get more info. Wishing you lots of success! Himashu

  58. Amjad Farouki says:

    Hello, I and my brother have RP when we were around 13 years old, Now I am 43 years and my brother is 44 years old. we are very interested in your study, please let us know how to participate int the study. wish you the best results. Thank you

    • EyeOnTheCure says:

      If you and your brother are interested in participating in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  59. mariadelCarmen Gutierrez says:

    Please, send me more information about the trial clinic my brother has RP for years and need help before he get completely blind..thanks!

    • EyeOnTheCure says:

      If you are interested in participating in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  60. Carrie-Ann Musselman says:

    Hello I am 42 retired nurse. I have advance RP
    With CME causing severe damage to my macula.
    I am very interested in your trials.

    • EyeOnTheCure says:

      If you are interested in participating in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  61. Brittany Washburn says:

    My husband is 39 & suffers from RP. He’s lost most of his vision, so much so that he’s not been able to drive among many other things for the past 6 years. We would love more information , and also to see if he might be a candidate for this trial. Thank you for your commitment to research!

    • EyeOnTheCure says:

      If your husband is interested in participating in Dr. Klassen’s stem cell trial, he should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  62. Nathalie Lund says:

    We are a family with all 4 siblings having RP ;type USH2A , so Usher and my son was born deaf , no RP signs . We are under care of Prof.Bart Leroy-Gent Belgium and Dr. Byron Lam -Bascom Miami,FL and after genetic testing they have found our defective family gene
    That’s where we’re at for the moment. Of course was very interested in reading your article & learning more about your research and clinical trial
    My last name is also Lund ,it must be a good sign !

  63. Jane says:

    How do we enrol. We from South Africa

    • EyeOnTheCure says:

      If you are interested in participating in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  64. Carla Beck says:

    My mom, sisters and nieces all have RP, we would be very interested in being in your clinical trial

    • EyeOnTheCure says:

      If your family members are interested in participating in Dr. Klassen’s stem cell trial, they should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  65. Hanifa says:

    Please please consider my family on you trail I have 3 sons suffering with this deadly R.P it’s been a very rough road I wish and pray all you wonderful sciencetes fine a break tru very very soon ! I pray dear god let it be soon !! Thank you and good luck to all you lovely people. I want to know what can I do to help with this program. Kind regards, Hanifa.

    • EyeOnTheCure says:

      If you are interested in having your sons participate in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  66. Guynella Key says:

    My soon to be husband was diagnosed when he was 15. He is now 34 and has already lost most of his perifial sight. Upon his last doctor visit they said his symptoms are progressing at a faster rate than normal snd that he may expect to have total loss by sge 45. Please let me know how he might join your study.

  67. Jim says:

    Dear Sir/Mdm,
    My elder daughter and Son have been diagnosed with RP. We will greatly appreciate it if you could let me know how to participate the trial.

    Thanks a lot.

    Regards

    • EyeOnTheCure says:

      The Foundation Fighting Blindness funds many clinical trials but does not manage the studies and so reaching out to them directly may be the best way for you to find out more about where they are happening and if participating is an option. The website: http://WWW.CLINICALTRIALS.GOV is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.

  68. Sam Patel says:

    My 19 year old Twin Son has RP and we would very much like to get more information regarding your clinical trials. Thank you,

    Sam

    • EyeOnTheCure says:

      If you are interested in having your sons participate in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

    • daniel morrissey says:

      Hi, my name is daniel morrissey and my mother has rp, she has lost most of her vision. i am one of her 4 children and ive been waiting for some kind of stem cell trial that i can get her into. We live in pittsburgh pa, id do anything f
      or my mother and for her to be happy. If theres any spots for your trial please let me know id do anything to get her there. This means the world to me thank you very much for your devotion to your work.

  69. Pranshu says:

    Please send me the information regarding your trials. My mom is having RP and I want to treat her asap

  70. JVI. says:

    Thanks to you and to God for giving you the heart to devote your life to this project. I have a son diagnosed with RP symptoms. I will pray for you and will like to donate to this project. The success of this project will bring relief to me, my son, my entire family, and of course to so many like us all over the world. Please include me in your mailing list.

    Many thanks

    JVI

  71. Barbara J. Varnum M.S., L.P.C. says:

    Dear Dr. Klassen, Oct. 19, 2014

    My son Stephen is almost 16 yrs. old and he was diagnosed with x-linked RP when he was 6 yrs. old by Dr. Eliot Berson at Massachusetts General. Dr. Berson has also identified the gene defect in Stephen. Stephen has been examined by Dr. Stephen Tsang at Columbia University in NYC. My husband and I would deeply appreciate the opportunity to have Stephen involved in your stem cell clinical trial. Stephen is a great kid with a big heart and your research will change his life. We thank God for the goodness in your heart to dedicate your life to helping those who are afflicted with this disease. Thank you dearly, Barbara and Steve Varnum 860-228-8790.

    • EyeOnTheCure says:

      You will be happy to know that AGTC, a biotechnology company is developing a gene therapy treatment for XLRP. FYI, here is the link to AGTC’s website:
      http://www.agtc.com/

      If you are interested in participating in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  72. Carlene says:

    Greatly appreciate all your work and research in the
    study for RP! I was diagnosed with RP several years ago and my peripheral vision is diminishing quite
    rapidly limiting me to minimal driving with no nighttime driving as well as many lifestyle changes. Would be honored to be considered for your clinical
    study. Thank You!!

    • EyeOnTheCure says:

      If you are interested in participating in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  73. Dear Dr. Klassen,

    Please allow me to be a participate in the upcoming clinical trails for stem cell in RP. I have lost much of my vision to
    RP, my field of vision is narrow and foggy.
    I am depending on your success in hope of my vision being restored.

    Thanking you in advance,
    Tommy

    • EyeOnTheCure says:

      If you are interested in participating in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  74. Christine Hoenig says:

    This article gives me so much hope. My son & my brother both have RP. Unfortunately as of right now my son will never be able to drive. Had been taking my son to Dr Stone in Iowa City for 10+ years until this year when insurance denied authorization. Now my son sees an optometrist, who unfortunately, doesn’t know much about RP & we have lost our school liaison. I would love for my brother to one day be able to see again & for my son to be able to one day drive. Please consider both of them for this trial.

    Thank you for your hard work in your research!

    • EyeOnTheCure says:

      If you are interested in participating in Dr. Klassen’s stem cell trial, you should contact Dr. Klassen. Here is his contact information:
      Henry Klassen, MD.,PhD.
      Phone: (949) 824-0710
      Fax: (949) 824-9626
      Email: hklassen@uci.edu
      University of California, Irvine
      Sue and Bill Gross Hall – A CIRM Institute
      Stem Cell Research Center, 2nd floor, Room 2035
      845 Health Sciences Road
      Mail Code: 1705
      Irvine, CA 92697

  75. Anne says:

    45 year old with 3 garls full of life, happy deaf American man in the banking industry really needs your help.

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