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• 50 years UNTIL FOR A CURE
• Posted: 2008-01-12 15:55:32 By HAMZA A
• I READ MARISSA P SAYING SOMETHING ABOUT A CURE IN 50 YEARS IS THAT TRUE THATS CRAZY LOL A LONG TIME I HEARD 2 YEARS FOR A CURE AND I ALSO HEARD 10 BUT 50 IS JUST WHOA

• Re: 50 years UNTIL FOR A CURE
• Posted: 2008-01-13 02:30:06 By Darran Z
• Actually Hamza, it's not that long. I read recently froma researcher at John Hopkins stating 10 years to 15 years. But it depends upon which research. You've got Neurtoech, transplantation (cell/ Stem cell) and Gene therapy. But the longer dates are more geared at Gene Therapy. But a real treatment is within reach.
  
  Darran

• Re: Re: 50 years UNTIL FOR A CURE
• Posted: 2008-01-13 13:22:58 By HAMZA A
• oh ok i see darran just a lil confused

• Re: Re: 50 years UNTIL FOR A CURE
• Posted: 2008-01-16 14:27:04 By Paul S
• When the FFB was first started in the early 70's as the RP foundation, researchers insisted then that a cure was only 10-15 years away.
  
  To understand this statement you have to understand how research grants are funded. If you say something is less than 5 years away, then you are into the commercialization/FDA trial stage and generally must pursue most funding from private sources.
  
  If you say 10 years away, your research has a much easier time getting federal research dollars and you can promise a lot more without concern for being judged later on the outcome.
  
  If a researcher says 10-15 years that means that nothing viable has left the investigative stage and that they are just guessing that something might get past investigative in the next 5 years.
  Saying 10+ years should be considered the same as saying 'I have no idea when there will be a cure'.
  
  I know that sounds pessimistic, that is not the intent just realistic. The chorus has been 10-15 years for almost 40 years now.
  
  When you start to hear statements like 5 years, I would get more excited.
  
  We are getting closer but to have something in less than 10 years would require an unexpected medical breakthrough.

• Re: Re: Re: 50 years UNTIL FOR A CURE
• Posted: 2008-01-16 14:38:58 By Darran Z
• Paul,
  
  I agree with you. I remember when I was first diagnosed and the RP Foundation before it changed to FFB and heard the same 10-15 years.
  
  But reality is, Neurotech is in Phase 2 and 3 of their studies and realistically, less than 10 years for a treatment to halt the progression is in sight. That is not unreasonable depending how fast the summary gets through FDA approval and since there is nothing to compare it with it is likely to go through quickly. Thus the 5 to 10 year mark is quite reasonable.
  
  But you also have to understand where other "investigative" projects are before they land FDA approval. There are many which are lining up for FDA approval right now so I'm willing to place bets that 20 years or so there will be multiple options for various stages of RP and a treatment for most people.
  
  Darran

• Re: Re: Re: Re: 50 years UNTIL FOR A CURE
• Posted: 2008-01-19 12:31:35 By Paul S
• I would agree that there will be more treatment options within 20 years, but the magnitude and effectiveness is still very unpredictable.
  
  I am still torn on the CNTF study and what promise it really shows. The phase 1 results only showed improvement in 3/10 people and was a very short-term study, so long-term effectiveness is still unknown.
  Even the phase 2 study (in which I am a participant) is very short (1 year for advanced, 2 years for early stage). Given that they allow 3 months for your eyes to fully recover from the surgery this study will hardly have a chance to show long-term effect.
  The Vit A study was 5 years and suffered from statistical anamolies, so I am concerned about the shortness of this study.
  
  Its a wait and see. :) and hope for the best.