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Valerie Navy-Daniels Joins FFB to Lead All Research Fundraising Programs

Valerie Navy-DanielsI am delighted to welcome Valerie Navy-Daniels to the Foundation Fighting Blindness family. As our new chief development officer, she is overseeing all of our fundraising programs — including events, major gifts and membership — as well as communications and marketing. As many of you know, most of our research is funded by these fundraising programs, so her role is critical to the success of our mission of saving and restoring vision.

Valerie comes to us with extensive experience and leadership in fundraising, marketing, communications and media relations. She’s held key positions with nonprofit organizations such as the American Red Cross and Boston Medical Center, as well as media outlet WCVB-TV Boston, where she was a broadcast journalist.

During her time with the American Red Cross, Valerie led and contributed to efforts to support disaster-relief programs around the world, including areas affected by hurricanes Katrina and Sandy and the Haiti and Japan earthquakes.

I think anyone engaged in the Foundation’s work will find Valerie’s warmth and energy infectious, and it’s clear from speaking with her extensively that she loves to fundraise for truly important, worthy missions. She has been very impressed with the work of the Foundation and very much wants to play a role in finding treatments and cures for retinal diseases. I am excited to have her join the fight against blindness.


6 Responses to 'Valerie Navy-Daniels Joins FFB to Lead All Research Fundraising Programs'

  1. alvin mcken says:

    hi Valerie my name Alvin Mcken i lived in the U.K
    and my daughter lived in new York Mt Vernon
    from she was a child growing she last one eye
    but now the other one getting really bad i just wonder if any thing can be done to stop from losing her sight all to gather. thank you very much

    Alvin mcken

    • EyeOnTheCure says:

      You 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
      You should 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 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.

  2. Evelyn cordero says:

    Seeking for more information and current research studies for Macular Distrophy. My daughter has been recently diagnosed with this condition and i cannot find enough information of the disease. All that i can find is more about age related macular degenation.
    She lives in Breckenridge, Colorado
    Appreciate any information or reources you can provide.

    • EyeOnTheCure says:

      Based on your description, your daughter may actually have what is called “Juvenile Macular Dystrophy”. Examples of this type of disease include Stargardt and Best disease. Your daughter should consider genetic testing to try and identify the mutant gene responsible for causing her retinal condition. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. If she obtains a genetic diagnosis, she may qualify for one of the gene therapy trials 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 daughter’s disease gene is identified or not, she 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/ Once your daughter has a specific diagnosis, she can find out about the various clinical trials on the website: http://WWW.CLINICALTRIALS.GOV. This site is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing provides information on what the study is about, the requirements for participating and contact information.

  3. My daughter was diagnosed with Stargharts at age of seven. She is now in her thirties, after many truamas and fights, had a successful education, good degree, travelled extensively, married with two beautiful daughter (not affected). She has always worked, has good support. The disease has now travelled to her retina and re-diagnosed as rod-cone dystrophy. She is happy, remarkably positive, does not dwell on prognosis. Is there any hope that her sight will not disappear completely??

    Always told that each individual case is unique and degeneration cannot be forecast. Boy with same condition, same age has the same level of sight he had as teenager…so no absolutes.

    • EyeOnTheCure says:

      Mutations in the ABCA4 gene can result in Stargardt disease, cone-rod dystrophy and even RP. The good news is that regardless of the mutation, gene therapy should be able to stop further degeneration. Your daughter and 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 However, before your daughter can apply to participate in any gene therapy trial she 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
      I also highly recommend that your daughter enrolls in “My Retina Tracker”, a free registry that helps people find out about clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link: https://www.myretinatracker.org/
      Your daughter may also be interested to know that there is a “Stargardt – Macular Degeneration” Facebook page where she 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 / biotech 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
      Visum Therapeutics, (http://www.visumtherapeutics.com) Visum Therapeutics is developing a small molecule therapy to treat Stargardt’s disease. Visum’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. Visum 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. Visum has identified a lead compound, VSM 20R, which is an enantiomer of an FDA approved drug that demonstrates complete retinal protection in preclinical studies. Visum plans to conduct Phase I and Phase II clinical trials in the near future.

      I hope you find this information helpful. Please feel free to contact me if you have any other questions or concerns.Thank you for your support that is enabling the development of new treatments for degenerative retinal disease.

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