As Parkinson’s patients wait, Fox Foundation and scientist feud over Nilotinib drug trial

statnews.com/2016/08/30/par...

Nilotinib, a blood cancer medicine, has long been considered for its potential to help Parkinson’s patients. Lab and animal studies suggested that the drug could protect dopamine-producing cells in people. But its toxicity made researchers nervous. Georgetown University lead a small safety trial using a small dosage of Nilotinib to test safety on PD patients. The results exceeded all expectations.

Nilotinib appeared to double patients’ dopamine production, reduce the death of dopamine-producing nerve cells, and clear from those cells a toxic protein associated with Parkinson’s and a related disorder, dementia with Lewy bodies. Relief from symptoms seemed equally striking among the 11 patients who completed the trial (conducted at Georgetown).

Phase II trials of the most promising new treatment for Parkinson’s disease in decades might be delayed because of a feud between a key scientist and the influential Michael J. Fox Foundation, which donates more money to Parkinsons than all other donators combined.

The trial offers Moussa, a little-known scientist, a chance to vault into the top ranks of researchers, while Fox and its collaborators could reinforce their standing and tap into a bonanza of donations from wealthy philanthropists and worried patients.

The episode also highlights the tension between scientists and foundations that are no longer content simply to dole out money. Following the lead of the colossal Bill & Melinda Gates Foundation, major medical research philanthropies increasingly seek to coordinate or manage studies, or control details of how they are done — vexing many grant recipients.

This is an important development for PD and I am hoping that we get to Phase II Trials quickly.

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  • Hopefully the powers that be can get their act together and stop the politics. Man I hate politics. Looks very promising though.

  • The MJF response to this article.

    bostonglobe.com/opinion/let...

    IN RESPONSE to “The patients wait” (Business, Aug. 31): No delay has been introduced in the timeline to a Phase 2 trial of nilotinib as a treatment for Parkinson’s disease on the part of the Michael J. Fox Foundation. More important, it is too early to deem nilotinib a miracle or to predict how it will ultimately stack up against the current crop of potential breakthroughs in the Parkinson’s drug pipeline.

  • Thank you great to have this! check this out as well newswise.com/articles/nobel...

  • Thank you, Dr. Yoshinori Ohsumi, 71 year old biologist, Tokyo Institute of Technology AND congratulations on receiving your recent NOBEL PRIZE (your research that led others to nilotinib).

    Silvestrov recently shared a different and cheaper supplement that was close to doing what nilotinib does. I printed it out and just spent 90 minutes looking for it in my files.....a case of not filing it correctly.

  • and that supplement is...?

  • See Silvestrov's response below. I don't have it. If I did I would have mentioned it.

  • what is the supplement?

  • Here is the link to xanthohumol:

    healthunlocked.com/parkinso...

  • silvestrov you don't have a photographic memory of some sort do you ? You still remind me as the Merlin of the Parkies. Now to find the excalibur of treatments.

  • No I don't have a photographic memory but I have the ability to remember information and where to retrieve it quickly. Though I do take supplement which enhance my memory like, magnesium threonate, alpha lipoic acid, acetyl l carnitine, nicotinamide/niacinamide and theanine. As we age we need all the help we can get.

  • Is there a single supplement with all of these things?

  • Unfortunately not. I but them separately, save acetyl l carnitine and alpha lipoic acid, and the best deal for Magnesium threonate is here (I use this brand):

    rakuten.com/prod/absorb-hea...

    Alpha lipoic acid and acetyl l carnitine have been shown to early Alzheimer's disease and they have huge potential for treating PD. Much ado has been focused on NAC but ALA is the universal antioxidant in the human body and it is both fat and water soluable so it passes through the blood brain barrier (ALC also passes the BBB). ALA & ALC for PD:

    Combined R-alpha-lipoic acid and acetyl-L-carnitine exerts efficient preventative effects in a cellular model of Parkinson's disease.

    "Most notably, we found that when combined, LA and ALC worked at 100-1000-fold lower concentrations than they did individually. We also found that pretreatment with combined LA and ALC increased mitochondrial biogenesis and decreased production of reactive oxygen species...."

    ncbi.nlm.nih.gov/pubmed/204...

    This combination should be taken on an empty stomach between meals and not after dinner. It is a strong pair of antioxidants and can cause mild stomach upset, for me at least, so if you try this combo just take 1 a day, between breakfast and lunch, and see how you feel.

    I take this too:

    vitacost.com/vitacost-alpha...

    Alpha lipoic acid is heat sensitive and should be kept in the refrigerator. If it sits too long over temperatures over 60 degrees it looses 25% of its potency.

    Theanine is a very interesting supplement because it has been shown to be protective in PD testing, Alzheimer's testing, it boosts the immune system......and is very safe. I take 200 mg about 1/2 hour before bed so it relaxes me prior to sleep. Interestingly it has strong anti-anxiety activity and actually outperformed xanax in a clinical trial:

    PD and theanine:

    "Furthermore, pretreatment with L-theanine significantly attenuated the down-regulation of brain-derived neurotrophic factor (BDNF) and glial cell line-derived neurotrophic factor (GDNF) production in SH-SY5Y cells. These results suggest that L-theanine directly provide neuroprotection against PD-related neurotoxicants and may be clinically useful for preventing PD symptoms."

    ncbi.nlm.nih.gov/pubmed/184...

    Theanine and xanax:

    lifeextension.com/magazine/...

    The brand of theanine I use is from nutrabio because it is pharmaceutical grade and the bottle lasts 2 years (assuming 1 scoop a day - up to 1,200 mg/day can be taken):

    lifeextension.com/magazine/...

    Nutrabio:

    nutrabio.com/Products/thean...

    Niacinamide/nicotinamide has been shown to be potential therapy for Parkinson's, Alzheimer's, Huntington's disease, ALS, MS, Friedreich's ataxia ...basically every neurological condition is has been tested for. It also is good for joint flexibility, the prevention of non-melonoma skin cancer....has anti-HIV activity....

    Pellegra was a disease in which corn and only corn, was eaten by impoverished people and corn lacks nicotinamide and tryptophan and parkinsonism is one possible neurological outcome:

    Parkinsonian features in a case of pellagra: a historical report.

    "Interestingly, pellagra and Parkinson's disease could share some basic pathophysiological mechanisms at the level of nicotinamide metabolism, resulting in mitochondrial dysfunction and alterations in dopaminergic pathways."

    ncbi.nlm.nih.gov/pubmed/240...

    When consumed nicotinamide has a 1 1/2 hour cycle in which the conversion of NAD, a precursor to NADH, peaks in an hour and at 1 1/2 hours NAD levels fall to slightly higher than before. So it is an energy (semi)vitamin. Niacin is converted into nicotinamide and nicotinamide is converted to NAD. Nicotinamide converts into twice the amount of NAD than niacin. Time released niacinamide cuts down on the pills you have to take:

    amazon.com/Source-Naturals-...

    1,500 is a safe, main stream dose and regular doctors say 3,000 mg/day is the maximum daily dose.

  • You have done a lot of research into this and I appreciate the info. Thank you.

  • Silvestrov, thank you, I will file it more carefully.

  • Plz see Silvestrov's response below.

  • I wouldn't rush out to buy this latest, greatest, super-anti-oxidant (Xanthohumol) just yet. If you weed out the superfluous blather describing the various biochemical interactions of Xanthohumol (in scientific terms, of course, which serve zero purpose for any except those hoping to appear scientifically attuned), you may discover that - as in the case of the multitude of wonder supplements that have preceded this latest revelation - its descriptors are liberally sprinkled with "may be", "could be", "potentially" etc., provided it's not combined with the popular glutathione precursor (NAC), etc. There is NOTHING about this supplement that qualifies it as being any more "important" than the multitude of duds that have debuted prior.

  • Check out what appears to be a new Nilotinib trial - foxtrialfinder.michaeljfox....

  • p-oui,

    I've had a look at the webpage you linked to. It says that the status of this trial is "completed".

    Jeff

  • I know, sorry about that, Jeff, however, Hikoi posted a link In our other nilotinib post that a trial is coming in a few months. Great news!

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