has anyone heard of gene therapy to treat... - Cure Parkinson's

Cure Parkinson's

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has anyone heard of gene therapy to treat pd? i have read where 15 people went thru phase 1 clinical trial and are now working on phase 2.

tmhiggs profile image
24 Replies

the results were very promising. this was groundbreaking news just recently.

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alllowercase profile image
alllowercase

Is that the same as Stem Cell research? If so, I saw something about that a few weeks ago.

tmhiggs profile image
tmhiggs in reply toalllowercase

no it's different from stem cell. but what did you hear about stem cell research? that also has promising results. thanks for taking the time to answer my ?

I think you are talking about ProSavin or

parkinsonsmovement.com/2012...

The most promising study I've been able to hear so far..............

Here is another link on ProSavin:

news.sky.com/story/9567/rev...

PatV profile image
PatV

There's something going on at NYU too. I'll try to find out.

tmhiggs profile image
tmhiggs

thank you all so very much!!

camper profile image
camper

Sounds good. How do we get on this trial?

tmhiggs profile image
tmhiggs in reply tocamper

working on it.... doing some research now.... i hope to get involved in this clinical trial also asap, if fortunate enough and i will travel anywhere to get this done... i don't care. i'm waiting to hear back from patv about place at nyu and my parents printed me off some more info. from net. as i was reading some of this what caught my attention was the ProSavin done over in paris and cambridge is the only study in the world that aims to reproduce dopamine in the brain and the gene therapy studys over here in america are aimed at protecting the dying cells. so, i don't know. i emailed biomedica... waiting for reply. you should check out the links that allnatural provided if haven't already.... thanks so much allnatural, by the way and also patv for checking on place in nyu! keep checking back as i will keep updating. as for you or anyone else.....please if y'all can the more research the better and please share your findings. if we all work together we can make this happen! i don't know about y'all but i am tired of sitting by the side lines and keep popping pills my doc gives me and dont get anywhere, but worse. i am only 43 and am progressing very fast .... can't hardly do anything anymore, including every day tasks everyone takes for granted such as getting dressed on my own. Thank God i have a very loving husband! I just want my quality of life back and once again be independent, perhaps go back to work! y'all have a great day!

alllowercase profile image
alllowercase

I heard that the stem cell research was having very promising results. So much so that I would be very happy to put myself forward as a guinea pig.

tmhiggs profile image
tmhiggs in reply toalllowercase

yep, i hear you. i was just waiting for the right study to make myself a guinea pig. now there are 2 - gene cell and stem cell - where exactly are they on the stem cell. i know the gene cell just passed phase 1 and are now working on phase 2.

alllowercase profile image
alllowercase in reply totmhiggs

Not sure where they are, as the article came during the terminal phases of my marriage a few weeks ago. But I will look on the net, and if I don't find it there I'll contact UCLH - they are bound to know

tmhiggs profile image
tmhiggs in reply toalllowercase

I'm sorry don't mean to sound stupid but what is UCLH

my neurologist says "Stem cell transplant treatments are not proven. There are a number of places throughout the world that claim benefit without careful followup of their patients. They typically charge $25,000 for an unproven treatment. Stay away from it."

tmhiggs profile image
tmhiggs in reply toParkinson_Schmarkinson

I know there r scams out there. I think it is still in clinical trials anyway that is what i want anyway..... I don't wanna wait another 5 plus yrs for approval before i can treatment, plus its free n sounds promising so does gene cell therapy..... I dont mind being a guinea pig.. I appreciate your comment. Thnk u

alllowercase profile image
alllowercase

Sorry - University College Hospitals, London

alllowercase profile image
alllowercase in reply toalllowercase

Yes, it is free, and you get to stay in the equivalent of a 5 star hotel for free. I believe some of the research places also pay some of your expenses. Let me at it !!!

Hikoi profile image
Hikoi

Guess you all know about registering with Fox Trial Finder as a way to get on clinical trials. The Is the link and includes Us, Ireland, Uk, Canada, Australia.....

foxtrialfinder.michaeljfox....

Hikoi profile image
Hikoi

Cure Parkinsons Trust has an afternoon patient education session in London tomorrow - 4th October and one topic covered is to be a ProSavin update. Will report back if people would like me to.

tmhiggs profile image
tmhiggs in reply toHikoi

yes, please do. thanks.

Sandralaw profile image
Sandralaw

I am in UK in Norwich area I am waiting for a appointment to have the gene test to see if my PD is a line of inherited gene or not, it is quite a long time to wait but I am going this Saturday to a totally different Neurologist to see about other symptoms. I am leaning to one side when watching the tv and I have bad pains in the back of the neck where I had 2 Vertabra out in 2011 I also have mild pain in head all the time and dizzy feelings but ,most of all I am good for nothing, I have gone from ok active walking etc to nothing even walking to my bathroom is to hard which is in a bungalow!. I am forgetting things a lot and I am getting very angry and bitter my GP wants to rule out other illnesses before coming back to PD. I am only 57 and I have had PD since 2004 I am at the end of my road and I am so fed up I am normally a very positive lady with laughter around me usually causing it, now I have changed so much my husband is so worried.

tmhiggs profile image
tmhiggs in reply toSandralaw

oh, i'm sorry. i hope you get the answer you deserve! keep us updated.

Hikoi profile image
Hikoi

Hi tmhiggs

I said I would report back after attending a meeting last week, but time ran out so the research update was very brief and nothing in particular I can think to report about regarding prosavin. The links all natural gives are very good aand here is one further article. dailymail.co.uk/health/arti...

tmhiggs profile image
tmhiggs in reply toHikoi

thank you for getting back to me!

rajbhai profile image
rajbhai

HI,I AM ALSO FOLLOWING THESE CLINICAL TRAIL MESSAGES ABOUT PARKINSON I DONT KNOW WHAT HAPPENING ABOUT THE PIG CELL TRAIL [D.B. S.] IN NEW ZEALAND. THANKS

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