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.
I would like to find other patients in the study to learn how the drug is affecting them. If you or someone you know is participating in this study, can you post the effects the drugs is having on you.
I
Hi I
fantastic news !
i am not on the trial as i already use a nasal spray 4 allergic rhinitis
gooodluck and hope u r on the raal thing which cna bring benefits tp us all
;lvoe jill
Hi Israel....my husband Frank is being assessed for the trial at Salford Royal Hospital. He went through all the tests then they found a trace of blood in his urine sample so we've had to wait for another test on another sample which is clear. So good news that they will re-screen him the week after next but bad news that he has to go through most of the tests again. Fortunately thay say he doesn't have to re-do the memory tests....he found those very tiring. Fingers crossed that they will then accept him.
Good news that you are walking & talking better...hope this continues.
I will try to remember to update you on progress.
Take care & keep smiling. Love Hazel B xx
Hello Israel we are PSP patients from Italy and hope this drug will help. But how are you sure to take davunetide instead of placebo? Tks Roberta Milan, Italy
Hello Israel, My husband is in the study at the University of Pennsylvania.
He is now in the 12th week of using the drug/placebo. Have not seen anything promising as yet, Infact his walking seems to be slowing up a bit. But we will keep at it. Happy to hear you are seeing and feeling a difference. If Ed is on the placebo, I am hoping at the end of the study he will be able to get the drug.
Good Luck to you and keep us posted. How long were you in the study when you started to notice a change? Thanks again. Betty
dorothy-thompson
Hello Israel, what great news and I am so glad that you are having a positive response so far, you must feel elated, long may it continue.
My husband is taking part in the trials at Haywards Heath, UK and he is having his second appt next week when we think he will get the drug or placebo, depending on the random selection. We have been told that medical opinion is encouraged by the results that they have been getting so far regarding the drug and the health watchdog in the USA is fast-tracking the research, we think that is a very good sign. Also,we have been told that if my husband does get the placebo, he will be given the drug proper at the end of the trials. So it looks like it could be a win-win situation whichever way we look at it.
good luck to everyone on the trials
dorothy-thompson
What wonderful news. My dad is on the nypta trial and has finished the one year trial and is on a 3 month wash out. He seems to have got a lot worse since not taking it. I'm ever so encouraged by the news. Do keep us all posted.
Izreal, is your walking and speech a Lot better? Or just a bit? How exciting!
Hi Israel Zehavi,
My husband is about to be assessed for suitability for the drug trial. We naturally are hoping he will be included. I'm pleased to see you are benefitting from taking the drug.
Best wishes for the future.
Peter2.
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
Hi Israel, my husband is on the drug/placebo for 9 months. I am happy to hear that you seem to be on the actual drug and that you are improving. How we hoped that my husband would be one of the people to get the drug. We now think he is taking the placebo. It seems now that he is dying. I so wished that the trial would be ended sooner than the 13 month period and the results would be so apparent that the drug would be made available to everyone. I am afraid that it will be too late for my husband. I hope that others can benefit from the drug if it works.
hi judy,
I am so sorry to hear from you that your husband is dying. As you know, the only way to fight the disease and to keep your sanity is to be positive. I am sure that your husband will make it.
All the best,
Kathryn
Hi Kathryn you are so right about keeping positive. We have given up on the drug and have put our trust in God, which has given us great peace and hope. He has been having some very good days.
hello Kathryn my name is Barbara and I was diagnosed with psp 2 years ago. I would like to know where to get davunetide. please let me know if you know where I can get it I don't know how long I can hold on with this.
barbara
Hello Everyone - I have a screening appt on 28th Sept at Haywards Heath. Just hoping they will accept me and, of couse, that i may be able to have the drug rather than the placebo. OOOh how it must be to walk normally again - my big problem is freezing of gait and resultant falling episodes. I live just outside Northampton, UK. PSP diagnosis August 2010. Best wishes to all. SueW xxx
My husband has been on the trial at Heywards Heath for about 3monthe and so far we have not seen any effect.
When did you start seeing the effects? Have there been any side effects?
My husband is back in Haywards Heath this thurs. I keep you updated on events if you would like me to.
Regards
Denmob
My mother is participating in the UCSF trial for the second time. I live in San Francisco and my parents live in Washington state. I'm so excited to read the positive results that others are having. We haven't had a similar experience with this trial, though she could have the placebo.
My mother shows most of the characteristic signs: loss of balance, slow, unsteady gait, slow speech, eye movement problems, etc. Unfortunately, none of the symptoms seem to be improving.
hi demnmod &wiclzzy,
lhave start to improveabouut 6 monthe after ib start to thake the drug ,my improvment is ; i am abel to walk now with or wiyhout the walker, for abou 500 yardaftyer i was ysing aelecytretee wellcher& my voise is improv dra,matikly at the same timer that i start to walk,. i am goinng to the jim 5-6 time aweek
wtclly , i have the ret of the simtomtos of psp too.
guys if you ssked me i bleve taht wat is keeping me going is postiv ateto and the exsercis'
all the best iosrael
Hi Israel.
Frank has been accepted on the trial & we go to Salford Royal Hospital 19th Oct for our 2nd visit so fingers crossed he gets the drug & not the placebo. Wil keep you posted.
Take care & keep smiling. Love Hazel B xx
Hi Israel how are you? when is going to finish the experimental period?here in Italy a lot of patient affected by PSP are waiting the delivery of davunetide........we're hope it will be asap
Buna ziua.
Sunt Annamaria din Romania , iar mama mea a fost diagnosticata cu PSP. Starea ei este foarte rea. Doresc sa aflu daca exista undeva in Europa clinici sau spitale care se ocupa de studiul cu DAVUNETIDE, deorece vreau sa o includ si pe mama mea in acest program.
Multumesc Annamaria
Israel let me know how things are
It's a long time that Israel doesn't leave a message about his status.
I hope everything is going well but please let us Know directly from you.
Thank you!
i want to join a clinical study on davunetide. i am a psp patient and i know there is no current treatment. my name is barbara and i have psp and i want to use davunetide.
barbara daughtry
mombcd1@yahoo.com
Dear Barbara, please note that the study of Davunetide was interrumpted in december 2012 because it failed (this said Davunetide's CEO).
Anyone of us, career or patient, was scared from this terrible notice.
We have no hope at this time because there's no advanced study in the world for PSP.
Good luck
On my search for this drug I came across this as well.Oct 24,2013.Could all that were doing the trail chime in on how it went
Thanks Deidre in BC
A Neurologist is Asking YOUR Help to do a Study On a DRUG that Extends the QUALITY Of LIFE and CAN Restore LOST FUNCTIONS to Those With PSP
A drug update for PSP
Nilotinib in clinical trials for PSP
Searching for PSP treatment 
