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VISIONS 2016 – Dr. Richard Weleber Receives FFB’s Highest Research Honor, Recognized in Touching Video

Dr. Richard WeleberConsidering all that Richard Weleber, M.D., has accomplished over four decades —
including leadership and oversight of clinical trials for emerging retinal-disease therapies and innovations in retina imaging and functional evaluation at the world-renowned Casey Eye Institute, Oregon Health & Science University — it comes as no surprise that he’s been given FFB’s Llura Liggett Gund Award for career achievement. Dr. Weleber became the 10th recipient of the Foundation’s highest honor, named after FFB co-founder Lulie Gund, during the opening lunch of the VISIONS 2016 conference.

But Dr. Weleber isn’t an extraordinary clinical researcher only because of his scientific achievements. He’s also special because of his compassion and caring for his patients and colleagues alike.

Karmen Trzupek, a retinal-disease genetic counselor at InformedDNA who previously worked with Dr. Weleber at Casey, provided a heartfelt video tribute (below) as part of the award presentation. It includes memorable anecdotes about the lives he’s touched.

What follows are more details on Dr. Weleber’s accomplishments:

He has been the principal investigator or sub-investigator in clinical trials for the following emerging therapies:

• Neurotech capsule for retinitis pigmentosa (RP) and dry age-related macular degeneration
RPE65 gene therapy for Leber congenital amaurosis and RP
StarGen gene therapy for Stargardt disease
UshStat gene therapy for Usher syndrome type 1B
• AGTC’s gene therapies for achromatopsia and X-linked retinoschisis
Valproic acid for dominant RP

Dr. Weleber is also leading one of the sites for ProgSTAR, the FFB-funded natural history study for people with Stargardt disease.

Among his many awards, he has received:

• Recognition from the Alpha Omega Alpha Honor Medical Society
• The American Academy of Ophthalmology Award for Distinguished Service in Educational Programs
• The Franceschetti Lecture and Award from the International Society for Genetic Eye Disease
• Recognition from Best Doctors in America

Pictured, top: Dr. Richard Weleber accepting FFB’s Llura Liggett Gund Award, via Skype. Video courtesy of David Freidle.


21 Responses to 'VISIONS 2016 – Dr. Richard Weleber Receives FFB’s Highest Research Honor, Recognized in Touching Video'

  1. Tosha Zaback says:

    Congratulations Dr. Weleber. I can’t think of a single person more deserving.

  2. Ellen Redenbo says:

    One of the most kind and caring physicians I have had the pleasure to work with. His patients love him!

  3. Dr. Marco Selaya says:

    Amazing story of generous contributions in ophtalmology. Congratulations for helping so many patents, that otherwise would be blind.

  4. sabit says:

    Hello. My wife is 35 years old and she idebtification with retinis pigmentosa 8 years ago. She see just juring the day but in the night she has a problem. We make a periometria evry tre month and for this period the right yeas is worst than left. I want to know to have any treatman to be better in the future. She use just lutein one in a day and one month use and one moth rest. Sorry if my english is not a well. Best regards

    • EyeOnTheCure says:

      You and your wife should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
      http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf

      Your wife may want to consider genetic testing to try and identify the mutant gene responsible for causing the disease. 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/genetic_testing_booklet_201311rev.pdf

      Whether the disease gene is identified or not, one 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. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

    • Josef A says:

      I have a younger brother who’s only six years with the same issues… Please let me know if there is anything I can do.. The doctors don’t have a clue on what to do for him..

  5. monique says:

    hi
    my soon has retinis pigmentosa. he had katarate. We are afraid that he lost his vision . what can we do for him ?
    thanks

    • EyeOnTheCure says:

      Dear Monique, You should consider genetic testing to try and identify the mutant gene responsible for causing your son’s 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, he may 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 your son’s disease gene is identified or not, you should still consider enrolling him 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/

      You may also find it 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. Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

  6. Bal says:

    Dr Weleber, please put all your effort and bring it forwards. All people with RP have hope on you. Give them sight and be their God!
    Regards!

  7. Kapil M Aggrawal says:

    Hi,

    My father is suffering from “retina pig mentosa” for last almost 25 years.

    Pls help

  8. Eda says:

    Pls help us with RP!

  9. Aabha kapoor says:

    Hi, I m suffering from stargard disease, I would appreciate if u can help.
    Thanks.

    • EyeOnTheCure says:

      Dear Aabha, You 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 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™) completed Phase 3 trials for dry AMD in June 2016. Unfortunately, the drug failed to slow lesion growth in over 500 patients with geographic atrophy, a form of dry AMD. Because of a strong demonstration of efficacy in the Stargardt mouse model, Acucela is considering initiating a study to explore potential benefits of Emixustat in patients with Stargardt disease.

      Astellas Pharma (https://www.astellas.us/ ) acquired Ocata Therapeutics in May of 2016. Headquartered in Marlborough, Massachusetts and supported by a research team in Tsukuba, Japan, Astellas serves as a global hub for regenerative medicine and cell therapy research in ophthalmology and other therapeutic areas that have few or no available treatment. At the present time, the RPE transplantation studies have been completed and the Phase 3 trial has yet to be announced. http://www.clinicaltrials.gov/ct2/show/NCT01469832?term=advanced+cell+technology&rank=2

      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 Medicines (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
      Thank you for your support that is helping to accelerate the development of new safe and effective treatments for inherited retinal disease.

    • Caroline says:

      If you don’t mind, can i ask which tests you had that confirmed your Stargardt diagnosis? Just asking as i’ve been waiting 5 years for a solid diagnosis and have not had any definitive answers. Was is the DNA testing or eye tests that confirmed this for you?

      Thank you, your insight on this disease we both share would be so much appreciates!

      Caroline

  10. Yash says:

    Hi I am also seeking a cure for stargarts. Please tell me what can be done about this?

  11. Vincent mione says:

    Please help us my 40 year old Deaf brother has been diagnosed with RP
    He’s been Deaf-mute his whole life and now he’s going to lose his sight it breaks
    My family’s heart.. Please any information any help anything to hold his sight
    A few years longer

    Thanks vinny

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