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• hopeful about research
• Posted: 2008-01-08 09:36:11 By Colleen P
• P.S.
  Is everyone hopeful about the research? Colleen

• Re: hopeful about research
• Posted: 2008-01-08 10:47:54 By Darran Z
• As Marisa will say "There's always hope!"
  
  There is much more hope today than there was in the early 80's when I first was diagnosed as a child. There are many research clinical trials taking place. Ther eis alot of work to do yet but they are making progress. Watch the Clinical Trials section of this site or go to www.clinicaltrials.gov and type in retinitis pigmentosa to see the current studies and future studies.
  
  As for your earlier post, you may want to dig around. Katie V has a Yahoo Parent Support Group she started. Hopefully she will respond to your post directly and give you directions. But many of us are parents, or affected individuals who are also parents. So don't be afraid to ask. Someone has an asnwer.
  
  Darran

• Re: hopeful about research
• Posted: 2008-01-08 11:42:08 By Katie V
• Of course I am hopeful about research. Will it be in my daughters lifetime. Heck I hope so but if not there will come a time when this is a thing of the past. I truly believe that. We fundraise for the FFB Canada ( Ride for Sight) whenever we are there you get goosebumps at how far things have come. Truly wonderful.
  
  In the meantime my daughter has to live her life like there is no cure. We have to provide her with the skills to live a very rewarding independant life.
  
  I am Katie who has the private Parents of Children with RP site.
  
  Katie

• Re: Re: hopeful about research
• Posted: 2008-01-11 01:11:41 By Marisa P
• Well, I haven't been on for a few days and I am just catching up. :) Yes, there is hope. Even researchers will tell you that we will first see a number of therapies to delay and or stop the progression and, hopefully, we'll see that with some of the ongoing trials. As Dr. Kimberling says, maybe in 50 years we'll find a way to completely eradicate RP. We are closer than we we were 20 years ago though. In the meantime, we'll keep living life the best way we can and take care of our eyes and overall health. :)

• Re: hopeful about research
• Posted: 2008-01-12 22:37:06 By frances C
• I just came from a FFB seminar in Tampa, FL. Dr Timothy Schoen spoke about ongoing research and development. I was on the edge of my seat taking notes frantically. For the first time since my sons diagnoses last year, I feel empowered and excited to get involved and help raise awareness. So happy to finally get answers to questions that the specialists cant seem to answer. I was surprised to see that none of the 50 people in the room today had ever had genetic testing. Its because none of the specialists in the Tampa area know who to refer to or even place any importance on it. He said that identifying the gene involved and what type of RP we have is the first step to getting ready for a prevention of progression or cure when they are available. There are many drug therapies, genetic therapies, and implant trials moving along. The research has surpassed the funding. We need to all get out there and raise awareness and do what we can to volunteer to help the FFB raise funding for the scientists. Vision Walk is coming to Tampa this year and we cant wait to help. These scientists and pharmaceutical companies are racing to beat eachother to find the thing that can help. In the meantime, we can have faith and relentlessly PRAY for them while we offer our time to help the cause!!!