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Meet Steve Rose

Steve Rose

Stephen Rose, Ph.D.
Chief Research Officer
Foundation Fighting Blindness

As the Foundation Fighting Blindness’ chief research officer, Dr. Stephen Rose – who prefers to be called Steve – is highly respected for his expertise, intelligence and tireless commitment to finding treatments and cures for vision-robbing retinal diseases. But it’s his accessibility and down-to-earth nature that stand out for many of his peers and Foundation members.

“With Steve, the door is always open. You can walk into his office at almost any time with a problem or an issue, and he is ready and willing to help,” says Dr. Brian Mansfield, the Foundation’s deputy chief research officer. “He also has a phenomenal memory and knowledge base to draw from. And in the event he doesn’t have an immediate answer for you, he’ll pick up the phone and reach out to his many friends and collaborators throughout the science community. The man is incredibly well-connected.”

Steve, who has a Ph.D. in microbiology and joined the Foundation in 2004, supervises its research efforts, which include awarding grants and facilitating clinical trials. He also manages the Science department and works closely with the Foundation’s Scientific Advisory Board, Board of Directors and Science Liaison Committee. Before joining the Foundation, he served more than 14 years with the National Institutes of Health, where he led several divisions, including genetics, clinical research and transplantation studies.

He’s also a member of many prominent scientific and research organizations, including: the Health Research Alliance, the American Society of Gene and Cell Therapy, the Association for Research in Vision and Ophthalmology and the American Association of Immunologists.

Despite his background, Steve has a knack for explaining scientific concepts and retinal research in terms that everyone understands, making him a popular speaker at Foundation and retinal-field events. Bill Schmidt, the Foundation’s chief executive officer, appreciates Steve for, among other things, his enthusiasm.

“There’s no one more passionate about retinal research,” Bill says, “and he does all he can to ensure that the Foundation supports only the best projects — those with strong sight-saving potential. There’s no better advocate for those who’ve lost or are losing their sight, and our recent success in driving research into the clinic is great evidence of that.”

38 Responses to 'Meet Steve Rose'

  1. Dan Haake says:

    I have an eye condition called CACD and am interested in any information regarding research on this desease.

    • EyeOnTheCure says:

      Dan,

      From the research literature, it appears that CACD – also known as central areolar choroidal dystrophy – can look in some ways like the dry form of age-related macular degeneration. CACD affects different regions of the retina including the choroid, retinal pigment epithelium, and photoreceptors. It appears that several cases of CACD are linked to defects in a gene called RDS (or PRPH2). Some are linked to mutations in GUCY2D.

      There are gene therapy studies ongoing for other retinal diseases linked to GUCY2D. There has also been some work on RDS gene therapy for other retinal diseases. We don’t know how well this research would apply to CACD.

      If you would like to discuss CACD further, contact us at info@fightblindness.org.

  2. Barbara Becker says:

    My 83 year old father is suffering from and. He lives in boynton beach Florida. His left eye is real bad and right eye had cataract surgery but vision is poor. Doctors do not offer him hope and his is pretty depressed. Is there someone in his area that you can recommend him seeing?

  3. Felicia B says:

    I have RP Could you please send me more informarion

  4. esther says:

    Iam a 33years old suffering from RP please I want to know if this disease could affect my child when I get pregnant.

    • EyeOnTheCure says:

      Esther,

      The likelihood of passing RP on to a child depends on the inheritance pattern for your form of RP. Here is a link to information that discusses the various inheritance patterns (scroll down a few paragraphs).

      http://www.blindness.org/retinitis-pigmentosa/risk-factors

      We strongly recommend that you talk with a genetic counselor or a doctor who is familiar with genetics. Sometimes, the inheritance pattern is fairly obvious. In other cases, it can be difficult to determine. Talking to a genetics expert will help you determine the risk for passing RP on to their child.

    • jack says:

      The dad answer is yes it can.

  5. masoud bakhshaiesh says:

    Dear Dr Rose ,
    The undersigned is from Iran and have come to learn on your foundation helping people to restore the low-vision.
    My mother who is 74 has faced the sudden low-vision problem since January.
    please let me know your email so that I could send you her angiogram of her left eye suffering from low-vision .
    My question is : Does she suffer from AMD ?
    It should be added that her right eye is with strong amblyopia.
    I appreciate your kind valued assistance in this regard and look forward to hearing from you soon.
    Sincerely Yours
    Masoud Bakhshaiesh

    • EyeOnTheCure says:

      Masoud,

      Thanks you for your comment. Unfortunately we are not in a position to provide individuals with medical advice or provide a diagnosis. We advise you and your mother to visit an eye doctor or retinal specialist. They will be best suited to make an examination and learn more. We wish you and your family the best during this difficult time. Please let us know if we can assist further.

  6. EyeOnTheCure says:

    Thank you for your message Rita.

    We would like to point you to a few places on our website that will provide some useful information. Be sure to visit our section on RP:

    http://www.blindness.org/index.php?option=com_content&view=article&id=50&Itemid=67

    There is a section on this page that discusses research advancements. While there is no cure for RP, much research is being done.

    We often report on new research advancements and so we encourage you to check out our RP written articles information

    http://www.blindness.org/index.php?option=com_content&view=category&id=65&Itemid=121

    We hope you find this information helpful. Please let us know if there is anything else we can help you with.

  7. Phyllis Gallaher says:

    I have low vision from wet amd & glaucoma in both eyes. I can read by enlargeing things & using a magnifying glass but I cannot read light printing even by magnifying. This seems to be a very common thing now. Quite often things are printed in white in a light blue background & this is almost impossible for me to read. I am looking for someone respected & in a position to talk about this & make it known how difficult it is for those of us who do not see well. Even enlargeing the print does not help if the print is light.
    Thanks for your help.

  8. My two daughters have usher. Can you give me any update if there working on a cure. Thank You

    • EyeOnTheCure says:

      Usher syndrome is the most common condition that affects both hearing and vision. A syndromeis a disease or disorder that affects more than one organ. The major symptoms of Usher syndrome are hearing loss and an eye disorder called retinitis pigmentosa, or RP. RP causes night-blindness and a loss of peripheral vision (side vision) through the progressive degeneration of the retina. There are three clinical types of Usher syndrome: type 1, type 2, and type 3. In the United States, types 1 and 2 are the most common types. Together, they account for approximately 90 to 95 percent of all cases of children who have Usher syndrome.
      The Foundation Fighting Blindness is currently supporting a gene therapy trial for Usher 1B. To read more about, see the following link:
      http://www.blindness.org/foundation-news/usher-syndrome-gene-therapy-study-begins-oregon

      To participate in gene therapy trials, you must first positively identify the gene mutation. For more information on genetic testing, please see the following link:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

  9. Maria Karageorge says:

    I need to know what is the treatment for macular degeneration please

  10. Deirdre Hulsen says:

    My two sons have Lebers Optic Neuropathy LHON and I am a carrier. Was wondering if you are doing any studies on this disease.

  11. Yousuf says:

    Dear Steve,

    my son since birth was diagnosed with leber congenital ameurosis and his vision is getting worse with time. He is now 8 year old and barely can seen anything except discriminate if light switch on or off. Is there a way you can help us in restoring his vision. We are in Oman and can come there in US for treatment. Please help us.

    • EyeOnTheCure says:

      Currently, there are no FDA-authorized treatments for LCA. However, the FFB is supporting a number of research projects that will hopefully soon result in new treatments. LCA is caused by mutations in one of twelve different genes. Currently there are gene therapy clinical trials for two of these, RPE-65 and LRAT. You may want to try and identify the disease gene/mutation that your son has. A molecular diagnosis is the most accurate diagnosis possible. With the genetic information you can check the medical databases to see what research is being done. You also may 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:
      http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf

      You should also consider enrolling your son 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/

      It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which 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.

      For information on the clinical trials for LCA, see the following links: RPE-65 (https://clinicaltrials.gov/ct2/show/NCT00999609?term=rpe-65&rank=6) and LRAT(https://clinicaltrials.gov/ct2/show/NCT01521793?term=lrat&rank=2). Additional information is available on our website on LCA here: http://goo.gl/IXhMX.

  12. Tom Carlin says:

    Dear Steve
    I’ve been reading amazing advances by a company named OCATA stopping the progression of AMD and in some cases increasing
    vision. Do you think this is a viable possibility that may be available to those of us suffering from this malady?

    • EyeOnTheCure says:

      Yes. I think that the RPE cell replacement therapy that OCATA (Previously known as Advanced Cell Technology: ACT) is developing, has a good chance of helping people with AMD. However, in the case of Stargardt disease, replacing the RPE may not be enough to stop further disease progression. This is because the ABCA4 transporter protein is defective or absent in photoreceptor cells resulting in an accumulation of toxic A2E that will eventually poison the newly transplanted RPE. A complete treatment may require gene and/or pharmaceutical therapy as well as RPE cell replacement.

  13. I commend you, Steve for the dedication and tenacity you have towards the field and the work you have accomplished in RP treatment. It is people such as you who give hope to those with little or none.
    Recently, I met a little girl who has this disorder and it is very aggressive. She only has about 20% of her sight left and she is only four years old. It saddened me greatly to learn of this disorder affecting someone so young. Since meeting her, I have read up a little on RP and know that there is hope with the gene therapy and upcoming clinical trials being pushed for by Genable and Spark.
    While, I cannot hope to comprehend the depth of the gene therapy, or the manner in which it destroys the bad proteins and infuses the good ones or how it is introduced into the retina by injection, I understand the benefits for those suffering with RP. Giving sight to those whose world become black day by day.
    It is my hope and prayer that I may request of you to assist me in getting her into one of the upcoming clinical trials.
    For someone so young, who has a future filled with so many possibilities, should not be destined to a life of darkness, shadows and faded memories of what her mother looked like, instead she should have a life filled with visions of green leaves swaying in the springtime breeze, her mothers’ smile as she wakes and the beauty of waves crashing upon the shore.
    If you choose to assist me in getting this little girl into the trials, please use my email address entered into this submission form. I will follow whatever path you lead me down.
    Whatever your choice on the matter, God bless you Dr. Rose for leading the charge against such a devastating, debilitating disease.

  14. Susan Laning says:

    Hello Dr.
    Reaching out to you today for guidance and insigh. My late mom was diagnosed with retinitis pigmentosa legally blind by the age of 59. My daughter was diagnosed with retinitis pigmentosa as well in Wheaton Il her age is 25 at this time she is progressively getting worse with night driving. She is aware of the retinitis pigmentos and aware that there is no care at this time she’s enjoying the site that she has but she still struggling trying to see. Hoping that I will be able to see a cure in my lifetime that she will be able to go on with life and see. I understand there is research being done everyday one step closer to curing retinitis pigmentosa. If at all possible love to be put on a list and updated information.

    Thanking for your hard work and many many hours of research .

    Susan Laninga

    • EyeOnTheCure says:

      Hi Susan, if your mother and daughter have RP but you don’t have RP, it could be indicative of mutations in any one of a number of genes that are inherited in an incomplete dominant fashion, that is the mutation appears to skip generations. At this point, the best thing for you to do is have your daughter undergo genetic testing. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. With a molecular diagnosis, your daughter may also 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:
      http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf

      Whether the disease gene is identified or not, your daughter should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which 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.

      I hope you find this information helpful. Please let me know if there is anything else I can help you with.

  15. Alyse Tumelson says:

    Dr. Rose,
    I am a graduate MSN (Family Nurse Practitioner) student at The University of Memphis and I have chosen to study Stargardt Disease for a project in my Advanced Clinical Pathophysiology course this semester. A dear friend, Tyler Kirk has been rendered blind by this disease, so I have a personal interest in this topic. Tyler is who advised me to reach out to you.

    For this project I will be creating a PowerPoint presentation on the disease, with the main focus being on the pathophysiology. I am looking for sequential photos or drawings of each stage of the disease with accompanying descriptions. I need this for my patho flow chart. Do you know where I might find something like this? Any information you could provide would be greatly appreciated. I admire the work you do!

    Kind Regards,
    Alyse Tumelson

    • EyeOnTheCure says:

      If you Google “Stargardt Disease “Fundus Photographs” and select the “images” tab, you will find that there are many good photos (some sequential) that you can use. Good luck.

  16. Madison says:

    My Mother has been suffering from stargardts disease since she was in high school (she’s 41 now). Her brothers went to Iowa to try the stem cell growth treatment but they haven’t heard anything back about it that I’m aware of. How could I schedule something to try a treatment on my mom? It hurts to see her struggling throughout each day with this disease it has stopped her from doing so many things in her life and I just want to do anything I can to help her. Please tell me what I can do.

    • EyeOnTheCure says:

      You and your mother will be pleased to know that the Foundation Fighting Blindness is partnering with Sanofi Pharmaceuticals on a gene therapy clinical trial for Stargardt disease. For more information on this trial, see the following link:
      http://clinicaltrials.gov/ct2/show/NCT01367444?term=stargardt&recr=Open&no_unk=Y&rank=2 In order to participate in this or any other gene therapy trial, you must first obtain a molecular (genetic) diagnosis. 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

      You should also ask your mother to consider enrolling in “My Retina Tracker”, a free registry that helps link people with retinal disease to appropriate clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/

      Of general interest, there is a “Stargardt – Macular Degeneration” Facebook page where people can communicate with other people affected by Stargardt disease. Here is the link: https://www.facebook.com/groups/Stargardts/

      Finally, below is a list of pharmaceutical companies that are developing therapies for Stargardt Disease:

      Acucela,( http://www.acucela.com/) is a Seattle-based biotechnology company that is developing several drugs for retinal diseases such as AMD, dry eye, diabetic retinopathy, retinopathy of prematurity and Stargardt disease. Acucela’s visual cycle modulators (VCM) reduce the activity of the rod visual system — in essence, “slowing it down” and reducing the metabolic load on the retina. Reducing the speed of the visual cycle has been shown to protect the retina from light damage and reduce the accumulation of retinal-related toxic by-products, including A2E, which is implicated in both Stargardt disease and dry AMD. The Company’s lead investigational compound (Emixustat™) is currently in Phase 3 trials for dry AMD. Once approved by the FDA, Emixustat could be prescribed for Stargardt disease.

      Ocata Therapeutics (https://www.ocata.com/), a Santa Monica-based biotechnology company, has developed an RPE cell line that is derived from embryonic stem cells (ESC). Studies have shown that the subretinal transplantation of ESC-RPE cells in a rat RP model resulted in 100% visual function rescue. Functional rescue was also achieved in the Stargardt mouse model with near-normal functional measurements recorded at more than 70 days. The RPE cell transplantation studies are now in Phase 2 human clinicals. Here is the link to the Clinical Trials.Gov recruitment web page: http://www.clinicaltrials.gov/ct2/show/NCT01469832?term=advanced+cell+technology&rank=2
      *Note: It is not known how long the transplanted RPE cells will last in a human patient with Stargardt disease. Unless gene or pharmaceutical-based augmentation treatment is coupled to the RPE transplant, toxic A2E will continue to be produced and eventually kill the RPE cells.

      Alkeus, (http://alkeus.com/) Alkeus has developed a form of vitamin A that upon light interaction, does not form toxic vitamin A metabolites and A2E. Alkeus’ lead compound, ALK-001, is an oral compound with a well-understood mechanism of action. ALK-001 was specifically designed to treat Stargardt disease by preventing the formation of these toxic vitamin A dimers in the eye. Alkeus is currently recruiting patients for a Phase 2 human clinical trial. Here is the link to the clinical trials.gov recruitment page: https://www.clinicaltrials.gov/ct2/show/NCT02402660

      Vision Medicine (Previously Visum) The Foundation Fighting Blindness is partnering with Vision Medicine to develop a small molecule therapy Stargardt disease. Vision Medicine’s novel approach proposes to develop drugs that will temporarily control levels of A2E in the eye and preserve the natural vision cycle, leading to a therapeutic treatment. Vision Medicine has discovered a unique chemical approach to sequester rather than eliminate A2E. Through this process, 25 diverse FDA approved drugs demonstrating both mechanistic and in vivo efficacy have been identified. Vision Medicine has identified a lead compound, VM 200, which is an enantiomer of an FDA approved drug that demonstrates complete retinal protection in preclinical studies. Vision Medicine plans to conduct Phase I and Phase II clinical trials in the near future.

      To read more about the partnership between Vision Medicine and FFB, see the following web link:
      http://www.blindness.org/foundation-news/foundation-fighting-blindness-partners-vision-medicines-develop-stargardt-disease

  17. amad says:

    hi dr. Steve Rose. I am 32 years old from Toronto. I have this terrible disease RP. scenes 25 years ago. I was diagnosted when I was seven years old. I can not read or type or even Walk by myself. it’s painful when the other doctors telling me that I have to prepare myself for the blindness. sorry but there’s nothing that we can do for you.. you know it’s just terrible… I have many dreams in my life l Like others people in the same age.. I am a singer and guitar player also… I don’t want to lose my total vision… what can I do please help me!!! thank you so much and God bless you

    • EyeOnTheCure says:

      Dear Amad, You should consider genetic testing to identify the mutant gene responsible for causing your RP. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also 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:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf

      Whether your disease gene is identified or not, you should also consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which 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.

  18. cj gehring says:

    my 33 year old son’s genetic test finally came back, from eye gene (14 months later) so, we were told he has 4- ABCA4 mutations. i asked the doctor why 4 of the same mutations and she said that just 2 were stargardts related. when i asked what the other 2 abca4 mutations were, she said…not stargardts related. geez! i am just a mom & have no idea if she was telling me he has another disease, on top of stargardts. it is sad that i had to spend the entire day googling the answer wheich is way above my pay-grade. i then asked the people in my stargardts support group for answers. this is just wrong. can you explain why someone has 4 of the same mutations & only 2 of the 4 are stargardts? what are the other 2 mutations??? thanks

  19. cj gehring says:

    i was told that lutein with zeaxanthin and the omega 3’s may help slow the progression of stargardts. do your research people…they both contain vitamin A and carotinoids (beta carotene) as found in exactly the foods you are to avoid. i would rather have no information than incorrect information. spread the word, as first order of business…DO NO HARM.

  20. Susan says:

    My Mother has dry macular degeneration in both eyes. Is there anything she can do? Magnifiers and bright lights don’t really help. No eye doctor has been able to help her.

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