Super article Kathleen, thanks

-----Original Message----- 
From: Kathleen Cochran
Sent: Sunday, November 08, 2015 9:22 PM
To: [log in to unmask]
Subject: Re: Ray's questions #1, #2, #3

Hi Ray,

Don Reed's book sounds like a great place to start.

Here's an article from Georgetown University -- nor sure if I posted it
before.

https://gumc.georgetown.edu/news/Cancer-Drug-Improved-Cognition-and-Motor-Skills-in-Small-Parkinsons-Clinical-Trial

Kathleen



On 8 November 2015 at 02:39, Rayilyn Brown <[log in to unmask]> wrote:

> thanks Kathleen
>
> Don  Reed's book  Stem Cell  Battles - Prop 71 and Beyond is supposed to
> be about how folks can best battle for progress in disease research, book
> comes out in December and I'm hoping for pointers on strategies for
> organizing. lets start with Don's book
>
> I think it should be noted that while a cancer drug may help PD, a  PD
> drug might help another disease or condition and there  is no reason why a
> leukemia patient should have to pay  over $10,000 a month to stay alive.
>
> Medical research and affordable  meds are good and worthy causes not just
> for Parkinson's.
>
> And yes, Nic, it  is very difficult  for me to "type" - have tocorrecct
> every other word, but I can barely speakk at    all,,sooo  computer  is a
> help
> Lets organize!!!!
>
> -----Original Message----- From: Kathleen Cochran
> Sent: Saturday, November 07, 2015 10:20 AM
> To: [log in to unmask]
> Subject: Re: Ray's questions #1, #2, #3
>
> Ray asked:
>
> 1.  Who is doing further trials? when and where?
>
> THE FOLLOWING TEXT IS EXCERPTED FROM A FORBES MAGAZINE ARTICLE BY EMILY
> MULLIN. I URGE EVERYONE TO READ THIS EXCERPT. IF YOU JUST WANT THE SHORT
> ANSWER TO RAY'S QUESTION #1, SCROLL TO THE END OF THE EXCERPT.
>
> THE ENTIRE ARTICLE (VERY WORTHWHILE) CAN BE FOUND AT:
>
> http://www.forbes.com/sites/emilymullin/2015/10/21/could-a-cancer-drug-reverse-parkinsons-disease/
>
> NOW HERE'S THE EXCERPT:
>
> ...The study [of nilotibid, at Georgetown] represents the first time a
> therapy appears to reverse cognitive and motor decline in patients with
> Parkinson’s disease, according to the researchers. “But it is critical to
> conduct larger and more comprehensive studies before determining the drug’s
> true impact,” said study author Dr. Fernando Pagan, an associate professor
> of neurology at Georgetown University, in a statement.
>
> The trial builds on animal studies conducted by Georgetown University
> assistant professor of neurology Dr. Charbel Moussa. In a study previously
> published in *Human Molecular Genetics*
> <
> http://hmg.oxfordjournals.org/content/early/2013/05/09/hmg.ddt192.abstract
> >,
>
> Moussa found that nilotinib prevented the buildup of toxic proteins
> associated with Parkinson’s in the brains of mice.
>
> The leukemia drug Tasigna (nilotinib) improved cognition and motor
> functions in patients with Parkinson’s disease in a small clinical trial.
>
> Nilotinib is approved to treat leukemia, and it works by forcing cancer
> cells into autophagy – a biological process that leads to the death of
> tumor cells in cancer. But in Parkinson’s patients, low levels may be
> enough to turn on just enough autophagy, or cell degradation, in neurons
> that the cells would clear malfunctioning proteins and nothing else. In
> other words, the drug seems to work by switching on the garbage disposal
> machinery inside neurons to clear toxic proteins from the cell, Moussa
> speculates.
>
> The clinical trial included 12 volunteers with Parkinson’s disease or a
> similar condition called dementia with Lewy bodies, the second most common
> type of progressive dementia after Alzheimer’s disease. Participants
> received daily doses of nilotinib in 150 mg and 300 mg doses – much 
> smaller
> than what’s used to treat cancer, which is up to 800 mg daily. While the
> study’s primary objective was to test safety, 10 patients demonstrated 
> what
> drug developers call “meaningful clinical improvements.” Researchers also
> reported that the drug was well tolerated with no serious side effects.
>
> It appears that in smaller doses once a day, nilotinib turns on autophagy
> for about four to eight hours – long enough to clean out the cells without
> causing cell death. Then proteins that build up again will be cleared when
> the drug is given again the next day,' Moussa said in a statement.
>
> While the results seem wildly promising, they should be interpreted with
> caution; the researchers did not study a control group for comparison.
> Also, nilotinib was not compared with other medications used to treat
> Parkinson’s in the study.
>
> Even if the drug is found effective in further studies, the cost could be
> out of reach for many patients. For leukemia patients taking nilotinib, 
> the
> drug costs about $10,360 a month.
>
> "The Georgetown researchers are now planning larger clinical trials with
> nilotinib for patients with Parkinson’s and other
> neurodegenerative diseases, including Alzheimer’s disease, which are 
> slated
> to begin in 2016....
> Ray asked:
> 2. What is opinion of neuros?
>
> My neuro  referred to the statement by the National Parkinson Foundation
> that most of us probably have seen (see http://bit.ly/NPF-nilotinib),
> which
> he thinks is a reasonable position to take right now. He thinks that at
> this point, to prescribe nilotinib off label for PD would be "unwise." He
> speaks of the smallness of the study, the fact that it was designed to
> study safety only, and the lack of a placebo group.
>
> Core message: Wait and see. Anyone else have a response from their neuro?
>
> Ray asked:
> 3.  How willing is  PD community to fight for progress?
>    and outrageous drug costs/note that drug developer Dr. Druker’s
> research paid for by Leukemia and Lymphoma Society, not Novartis,  drug
> producer
>
> Obviously, each of us has to assess our priorities and gauge our limits as
> to how willing and able we are to take an active role. And getting
> organized is a challenge. But given the stakes and the promising nature of
> this treatment, it seems to me that if there ever were a time to push
> ourselves, it's now.
>
> If anyone has thoughts or suggestions on what this might look like and how
> we might proceed, please speak up. Let's see if, together, we can generate
> some traction.
>
> Based on my almost 20 years with this disease, the time to start fighting
> for this research and for affordable treatments is now...or, more likely,
> yesterday.
>
> Kathleen
>
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