A reference to a new GU nilotinib trial for PD?

[jeffreyn]

Alan Hoffman, one of the participants in the first Georgetown University nilotinib trial for PD, has just added a new post to his blog.

If I've understood him correctly, he says that the next trial is planned to begin in January. He also says that Novartis have promised in writing to provide Tasigna for all trial participants after the trial ends.

advenventurouslifewithparki...

[p-oui]

Thanks so much for sharing this. I am glad Novartis is picking up the tab for a clinical trial that will benefit them tremendously if it is approved as a PD med. It seems like a small price to pay for that whopping benefit. The real contributors are the PWP who are taking a risk in the clinical trials. Not to rant, but I wish there were some government guidelines big pharma had to follow, such as they always offer the drug at no charge in clinical trials or that participants in a clinical trial are protected at the end of a trial. For example, I understand that at the end of Phase I of the small trial with Nolotinib the participants wanted to continue the drug but couldn't afford it. In spite of their requests to Novartis, it was refused. That had to be "a difficult pill to swallow".

[p-p-]

Dear Alan, I am a patient of Dr. Pagan (Pam Cota ) I sent the Fortune Magazine article with your experience to many people for grant monies . I managed to get Michael J. Fox to call Dr. Pagan. As a former SAG actress, I appealed to Michael Dr. Pagan had 3 teleconferences with the foundation of Michael. He gave them abundant information. They in turn called other institutions about this amazing discovery. They ran with it ! They said they wanted to make money and Dr. Pagan would of course be included. Dr. Pagan's response was " I do not want to make money but to treat and cure his patients " I was more than upset since it was hours of work to get Michael. When I saw Dr. Pagan I said , " I am so sorry that Michael is a swinepuss " Dr. Pagan said it was not Michael but his foundation. I guess there must be some wheel and dealers in Michael's foundation. Upon the next visit to Dr. Pagan he came in with a little entourage. He came up to me with a smile and gave me a Teddy Bear hug. He said I suppose you would like to know that the Pharmaceutical Co. that produces " Tasigna. gave him 10 million dollars to do the next trial and to continue his research. Dr. Pagan wanted to contact philanthropic people who would be interested in the cure of Parkinson's. Well I decided to help again. So I contacted Bill Gates. No dice. However, I will continue to help Dr. Pagan obtain money for the 3rd trial. I am 73 years old and I am also a Parkinson's patient. I am dammed to give up ! Well Alan don't you give up either. Sincerely, Pam ([e-mail] )

[Mamapaula in reply to p-p-]

Help me. I'm a young 78. My pd is going fast . Motor control. No shaking. I can't find a trial in sc. I can get the MEDS in Canada fo 40 $. A pill, I will take out a loan on house. Do u know where I could get directions for taking the Tasigna 150 mg? In not sitting and waiting for death. Please help me with any info Jackson. Blessings

[Mamapaula in reply to Mamapaula]

[e-mail] for Jackson

[p-p- in reply to Mamapaula]

I also am a jolly 73 year old. Try Georgetown Research Hospital in the Neurology Dept DC. Excellent treatment ! Good luck! Pam

[jeffreyn in reply to p-p-]

Hi Pam,

Thanks very much for your comment, and for all your efforts to raise funds for PD research.

If I've understood you correctly, you say that for the 3rd trial (i.e. the nilotinib-for-PD Phase 2 trial), the search for funding is still in progress. Have I understood you correctly?

By the way, if you want to be sure that Alan Hoffman sees your comment, you should post that comment on his blog, using the link which I provided.

Jeff

[p-p- in reply to jeffreyn]

Yes Jeffry I am trying to raise funds for the 3rd trial be means of appealing to those who would be interested to fund the 3rd trial.I would explain that it not only helps Parkinson's, but in some cases dementia and Alzheimer.(as it progresses from Parkinson's) Of course, the individuals would have some kind of means.But since you asked the questions 5 days ago I have discovered some possibilities.Using the net I hope it works. All the information remains confidential at this point,but I will scream out loud if it happens and I will tell everybody! Thanks for asking. Wish me luck! I am determined to help find a cure ! Sincerely, Pam

[jeffreyn in reply to p-p-]

Hi Pam,

Good luck from me, and I'm sure, good luck from everyone!

Warm regards,

Jeff

[p-oui in reply to p-p-]

Thank you for your incredible work!

[Mamapaula]

If you will take me in trial at 79my wife and I will bring camper and stay there for trial. I'm worse by the day. I was a runner. I have no health problems. Be 120/68 pulse 64 consistent. Please give me a chance. Jackson Sartain

[jeffreyn in reply to Mamapaula]

Hi Jackson,

As far as I am aware, the planned nilotinib-for-PD trials have not yet called for volunteers.

I'm pretty sure that when they do call for volunteers, one of us will notice it and post the information for everyone to see.

Jeff

[p-oui]

Jeff, it is my hope that once the trial is accepting volunteers it will get posted! BTW, should be a phase II trial since they recently completed the phase I / safety trial.