Allon Therapeutics (fka NPCUF)

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FWIW...

Posted by IsraelZehavi 2 Sep 201121 commentsReport

I am a PSP patient who is in an experimental study at UCSF testing the drug Davunetide. I am looking for other patients who are currently in this study.After six months, this drug has improved both my walking and my speech.

Hi guys,
I'm on the trial drug for the last six months and the last 2.5 months I have a tremendous amount of improvement in the way I walk. I am more agile, and my movements are more relaxed and normal, as opposed to stilff.I can now walk about 500 yards without getting tired. My speech is also much better the last two months. I am able to speak louder and it is easier to understand me now compared to before taking the drug.
Because of these changes, I believe I am getting the drug and not the placebo.
Thank you for your answers and all the well wishes.
Please let me know who of those who answered me are from northern California.
All the best,
Israel Zehavi

http://psp.healthunlocked.com/blogs/45449/searching-for-psp-patients-using-davunetide

andrew 29 Mar 2012Report
Hi Jill

With regard to the davunetide, it could be. Its a little hard to say for sure, but certainly Mum is in a better physical and mental condition than she was in November, and that may be connected to the davunetide.

http://psp.healthunlocked.com/blogs/187743/A-little-bit-of-hope-perhaps

Some good news

Posted by CateT 2 Nov 201119 commentsReport
Hello everyone,

I wanted to share some good news with you all. For well over a year now my mum has not been able to speak to us and we have explored so many avenues trying to communicate with her. Its been horrible and I think we all felt that we had lost her.

However, she can now speak to us in phrases and even sentences that we can understand! It is completely wonderful for me, I really do feel like I have my mum back. Sometimes we have to ask her to repeat things but the improvement is remarkable!

It could be as a result of a change in medication. She has been taken off a strong sedating medication called trazadone and put on amitriptaline. She is also on the Brighton trial of Davunetide but I am too cautious to say it could be as a result of that as we don't even know whether she is on the placebo or the medication.

Whatever, I am loving it. It makes everything else easier to bear, just being able to have a chat with my mum again.

Cathy

http://psp.healthunlocked.com/blogs/66439/Some-good-news

judy1962 18 Jun 2012Report
My husband did relatively well for one year but stil progressed. His decline was rapid once taken off
Reply to this

CateT 23 Jul 2012Report
My mum has had such a decline in the 2 months she has been off the trial that I just can't help wondering if it may have been the drug holding her steady for the last year. It could be coincidence though obviously.

http://psp.healthunlocked.com/questions/318521/Is-anyone-in-the-devanutide-trial-having-any-material-benefits-