MJFox foundation

[Rupa88]

MJFox foundation!!!!!!

What the heck are they doing??

spebding donation money on themselves and useless pitty research projects?

really disappointed

[dentonpark]

Research world wide, if a breakthrough occurs...it will be known.

[parkie13 in reply to dentonpark]

It's a drop in the bucket. I believe it's a forefront and an excuse, telling everybody that yes, We are doing something for parkinson's . What a bunch of CROCK.

[HekateMoon]

The world of NGOs and funding....🙄

[Bolt_Upright]

Do you have some examples please?

[parkie13 in reply to Bolt_Upright]

Yes, just recently somebody on this list posted an article about it. The gist of the article was till the governments get together or put money where it counts we are never gonna know either the cause or what's really going on. The Parkinson's numbers are increasing as well as the cost.

[Patrickk in reply to parkie13]

Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.

scienceofparkinsons.com/201...

According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.

cureparkinsons.org.uk/news/...

South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.

Started this before with stem cells from other monkeys and had some success I think until local immune systems attacked foreign cells.

So there is even realistic hope for a cure.

[eschneid in reply to Patrickk]

Sorry, but not usually so negative.. when I hear and I've heard for a while on this one, stopping it in its tracks, mice, open label (is that when you peel your Budweiser label off your bottle) I have my doubts.. Healthy Happy New Year to all and hopefully some real progress.

[Tommiks]

You are right. This is my speech. I've been criticizing the Foundation for a year.How has Parkinson's disease changed since the Foundation was established in the USA in 2000?

[Tommiks]

What an absurdity?! It was announced a few weeks ago that the Google co-founder has donated over $1 billion to Parkinson's research. The Michael Jean Fox Foundation has also donated approximately over $1 billion to research into Parkinson's disease. I wonder what more do we know about the disease with $2 billion. Nothing new at all. We're still taking the same drugs that were invented 50 years ago.

[michelagvolpe]

I agree! MJFF has funded a research on hypoxia and parkinsons, it's a useless research because I'm a freediver underwater when I'm in hypoxia I have a worsening of pd symptoms. But the research is being led by a prominent neurologist who is backed by a drug company that is wasting time and money on a drug that doesn't work. Personal experience described in my book being updated: amazon.com/Waiting-Michael-...

[ddmagee1]

I have participated in the MJ. Fox Foundation's Research studies, along with 23 and Me DNA studies, for Five years, and have benefitted from the testing and updates!

[Rupa88 in reply to ddmagee1]

what benefits did you have?

I am not talking about minor individual benefits.

As an organization they have done nothing except rerouting money into their pockets

[ddmagee1 in reply to Rupa88]

I got my DNA analysis, from 23 and me, paid for, by MJFOX Foundation. Every few months I provide updates on my medical conditions, to MJFOX Foundation, and 23 and me, and, I am told, it is used by their researchers, to help them. These are very comprehensive, asking precise questions about my daily life, living with PD, medication adjustments, progression, what kind of, and how much help, do I get from medical professions, family, friends etc. Also, I have been given direct access, to medical researchers, for 23 and me, at an Indiana University, should I need to ask questions, or need help with a problem I may be having, related to PD. I am provided with info. concerning further clinical studies, related to PD, where I might be qualified to participate in. I am informed of research breakthroughs from MJFOX Foundation!

[eschneid in reply to ddmagee1]

Glad you're getting some benefits out of it, but for me out of 23andMe now comes supposed relatives from all around the world that are my 8th cousins 7 times removed who I never liked anyway writing me for information or should I say pfishing for information.. can't wait to see who's in touch today!

[ddmagee1 in reply to eschneid]

I would agree about the relatives/ cousins, phishing for information!

[Tommiks in reply to ddmagee1]

I thought all Parkinson's patients should benefit from the research? So in the end we have nothing again.

[Pixelpixie in reply to ddmagee1]

curious as to what benefits you’ve had from DNA testing other than knowing which gene plays a role

[ddmagee1 in reply to Pixelpixie]

Please see my above reply!I do have continuing benefits from 23 and Me, at no cost to me.

[dkdc in reply to ddmagee1]

charitynavigator.org/ein/13...

[WhyRBD]

After 200 years, Big Pharma is not and will never find a cure for PD. IT is not a drug problem. All MJFF can report is their progress in drug research and the billions and billions spent trying. Yet in PPMI they are not asking the simple questions that are needed in order to find a cure. For example, Specific dental questions, Have you been tested for gut dysbiosis, What are your SCFA levels, and the list goes on and on. The really sad part is when they are asked the just ignore. Very apparent who (Big Pharma) is running the show at MJFF.

[Buckholt]

There is no doubt that we are lucky to have the MJFF, and we just have to hope that something good will turn up from all the cash spent. Like all big charities, the cost of salaries never ceases to amaze and it was reported back in 2017 that 32 individuals received more that $100000 with two people earning over $750k. It obviously provides a good living for many and hopefully they are working flat out to make there own positions redundant!!

[dkdc in reply to Buckholt]

where is this information found? thanks

[Cons10s]

cures are not a sustainable business model for charities.

[slimweiss]

I signed my husband up with MJFF and all we ever get (besides the first survey) is a request for us to donate! We paid for Ancestry.com ourselves and in order to find anything significant out we have to pay a monthly fee. No help whatsoever.

[Despe]

Too many jobs are at stake! We have previously discussed MJFF donations and how many jobs will be lost should a cure is found. Did you ever think of that? PROFIT is the name of the game, SAD!

[Rupa88]

dirty and unfair politics as always

[gomelgo]

What can we expect from a system set up for all to be desperately seeking "finances"? I'm glad to see others here who see that. What I have noticed is that this "profit seeking" is inevitable as long as everyone has to "put bread on their table". Because sadly, all the bread has to be "paid for". It's just not sustainable ... for anyone... period. We need to get more creative and instead of looking for funds and "treatments", look to the root causes. Can you tell I'm reading Ending Parkinson's Disease right now?