Clinical Trials

[kryste]

My Aunt Bev has had PSP for 7 years now we just got off the phone with the research director at UCSF she qualifys for two trials one observational and one clinical we are so excited some kind of hope if not for her she says for others in hopes she can help others with PSP

[Pippalina]

What wonderful news there may be light at the of the tunnel.My husband is desperate to partake in trials when they come to the south west of England.Here's hoping for good news at some point.

[peterjones]

good on yer aunty bev \\\ peter jones queensland Australia psp sufferer

[peterjones]

I say again =good on yer\\\\\\ aunty bev peter jones queensland Australia psp sufferer

[kryste]

Hi Peter I hope you are doing well I am so happy i found this site I have been taking care of my aunt for almost 3 years now we are pretty much inseperable she is a lot of fun, and a tropper I pretty sure I know more about PSP than most docs she goes to LOL I sure hope you have someone that takes good care of you its really hard on the person who has PSP All I have to do is say to my aunt Bev ROADTRIP she smiles and gives me the thumbs up (letsgo) its just me and her and we make it work she has had psp for 7 years how long ago were you diagnosed if you do not mind me asking ok hope to hear from you again

Kryste

[kryste]

forgot to mention the clinical trial is a new drug never tested on humans so keep your fingers crossed

[Christine47 in reply to kryste]

Fingers are crossed for your Aunt . Is it the TPI-287?

[kryste]

I am sorry I cant find the email with the name it does start with a T and all I know is that its never been tried on humans. I refuse to give up there is something new everyday we just have to find it

[jillannf6]

good luck iwht the trial

who knows the drug might work of her

lol JIll

psp sufferer fm the uK

[Heady]

How to cheer a girl up! Someone is trying to do something about this dreadful disease. Let's hope they get the right results!!!

Lots of love

Heady

[jimandsharynp]

Fantastic that your Aunt can be helpful in resolving PSP. She is a bright spot for all of us who don't qualify for this or lost loved ones to PSP. Thank God for people like her! Hugs to her! Jimbo

[cabbagecottage]

wishing you pits of luck . It's worth trying anything . What have you got to lose .

[kryste]

I hope it works two My Aunt Bev thanks for all the wishes She has such a love for people and animals she just hopes if nothing else she can help someone in the future even down to dontating her brain ,

[jillannf6]

ps i have donated my brain for research when i DO die - not for a while yet tho!

lol JIll

PSP sufferer from the UK

[kryste in reply to jillannf6]

That is so awsome someone needs to find out what causes this my aunt worked for a dintist all her life when we have our meeting in San Fransico with all the docs i am going mention it they were messing with mercury all the time its got to be something we just have to keep looking thaks for writing she not going to die for a long time either 7 years now she has had it i keep her so busy just taking road trips to get her out of the house she has no choice but to keep going she loves just going looking at things. keep in touch

[JudyJ]

Kryste:

I'm so very happy for your Aunt...and for you and your family.

I saw for your profile you're from the States. Where/what facility is she going to participate in clinical trials?

I'm from Minnesota. I also ask my Neuro if he knows of any trials and he says 'no'. He knows I'd leap at the chance to be in one. I'm 56, diagnosed 2 years, deemed to have had PSP for about 4 years preceding the diagnosis. I have two daughters in their early 20's and would like to be here a long while yet.

Can you message me where your Aunt will be doing this and perhaps a contact number? If it's across country, so be it.

Thanks!

Judy Johnson

MN

USA

[kryste]

Hi Judy I would love to this name is Dan Luong UCSF Memory and Ageing Center in San Fransico his phone # is 415-476-9578 give him a call hes a really nice guy hes the cordinator for PSP research there is a team of doc we are going to see I am so excited Aunt Bevs Nuro said no to me too but I just went hog wild called and typed in every thing I could just trying to find someone doing something, and he finally called me back I have been trying for a bout 2 years I hope you qualify we will go down 3 times a year for 3 to 5 days to San Fransico get on it maybe we can go at the same time that would be fun I love SF keep in touch

Kryste