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• Any Updates on the CNTF Clinical Trial??
• Posted: 2008-03-02 17:59:34 By Rick H
• Hello,
  
  Anyone have any updates, good or bad, on the CNTF implant clinical trial? I am going for my 6 months check up next week. I really haven't noticed any changes. Thanks,

• Re: Any Updates on the CNTF Clinical Trial??
• Posted: 2008-03-02 21:24:00 By carolina s
• Rick
  I am a CNTF participant also. Are you in the early stage or late stage ? Please contact me priavetly
  carolsalas@verizon.net

• Re: Any Updates on the CNTF Clinical Trial??
• Posted: 2008-03-03 08:47:51 By Carol C
• Rick,my brother will soon have his 6 month checkup as well (Sept. 21 in Ann Arbor, MI), and I just spoke with him last evening. He notices continous gradual improvement in his vision ( late stage, 75% vision gone by diagnosis at age 34, will be 38 this fall). He has an unusual form of RP, cone-rod dystrophy or sometimes "inverse RP", so this may be why his experience has been good. Also, I read that some participants would receive a higher dose of CNTF, and some a lower dose. Maybe he received a higher dose. He gets only acuity tests done with a field of vision test at the end, but he notices subjective improvement in both. He is taking classes with the MCB,Braille, mobility training, etc. and his vision is so "good" that he has to work blindfolded. This seems weird to me as the inplant went in one eye only ( or so they say- did some get two??)I'm wondering- can the brain get so used to receiving messages from 2 eyes that it translates what is received from one as binocular when it isn't? I read about Charles Bonnet Syndrome in which people who have suddenly lost vision will "see" fantastically detailed landscapes and little people, having remarkably similar experiences ( mostly pleasent visions, it seems), which obviously, the brain must be "making up". So possibly brain responses are playing a part in my brother's experiences. All very fascinating! His actual exam is March 18- I'm keeping his little ones that day, so I'll get an immediate report, and pass it on!!! Carol

• Re: Re: Any Updates on the CNTF Clinical Trial??
• Posted: 2008-03-04 14:22:29 By Davida L
• Hi
  I am participating in the CNTF also if you want to contact me.
  Davida Luehrs
  ddluehrs@aol.com
  703-742-8043

• Re: Any Updates on the CNTF Clinical Trial??
• Posted: 2008-03-03 11:35:34 By Nikki s
• hey rick,
  
  is this study going to last 12 or 18 months? i have read both..i wonder if people have been told not to discuss their progress on this website..seem most go private..hope things start to improve vision wise!!

• Re: Re: Any Updates on the CNTF Clinical Trial??
• Posted: 2008-03-03 14:24:06 By Rick H
• The study is for both 12 months and 24 months depending on whether one is in the early stage or late stage trial.

• Re: Any Updates on the CNTF Clinical Trial??
• Posted: 2008-03-08 11:53:51 By Carol C
• Rick, are you the same Rick with messages about having cone-rod dystrophy? My brother has this, and we're looking for relatives that will want to have the DNA test done ( a test was developed from my brother's sample that can tell any relative if they have the same gene). Ours is X-linked, but we would think it some kind of recessive form as no direct ancestor back 5 generations hs had this. As we know a number of 2nd,3rd, 4th cousins, we know it's X-linked and have the DNA test to prove it ( RPGR ORF15 gene mutation). One 4th cousin has just had the test and has the exact mutation. Cone-rod dystrophy is much rarer than typical RP, so we are told. Do you know if yours is X-linked? You can contact me privately at ectjcarlson@aol.com if you choose. I would love to let relatives know about this test as many may have their lives "on hold", wondering. Also, if a test could be made off my brother's sample, why not off others??? The more we can learn about these mutations, the better. Carol