Meeting scheduled with team from Massuchetts General about what we, PWP can do to support their personalized cell therapy trial.

I have a zoom meeting scheduled with Mass General during which we will be discussing what PWP can do to support and promote their personalized cell therapy trial. Constructive and helpful input would be really appreciated as I prep for this meeting on the 26th.

Disclosure: I am inexperienced. I do not have a specific plan. I am not starting a charity. My appreciation for existing non-profits is sincere. I do not want to compete with or disparage PD non-profits but am adament that questioning what they are doing and why is constructive.

I will no longer respond to responses I deem hostile.

[Parkinsonjisung]

Well done! Hope its productive

[Gratitude60]

Wow; I am really impressed you pursued and were able to get a meeting with someone from Mass General. Good luck! Keep us posted.

[kind2animals]

That’s pretty impressive. How did you set this up?

[kind2animals]

As a sidenote, I’m worried about this health unlocked website. The software seems to be kind of buggy. The conversation we were having the other day regarding some examples of people thinking out of the box, seems to have disappeared. At least when I try to access it from the email notifications I am receiving it says that page no longer exists.

[ConnieD in reply to kind2animals]

Why would it disappear was anything going against HU policies?

[kind2animals]

I’d be interested in knowing if other institutions are also moving forward with personalized cell therapy. I am interested in knowing what the degree of difficulty is in producing the cells. There seems to have been a recent breakthrough at the University of California at San Diego with regard to producing the cells. Also interested in knowing the degree of difficulty of the implantation surgery. Is this something only very specialized facilities and doctors are able to accomplish? Or is it something that any reasonably equipped neurosurgery facility anywhere in the world could accomplish.

[Hidden in reply to kind2animals]

Look in to Aspen Neuroscience and UW-Madison

[kind2animals in reply to Hidden]

Thanks for the tip. I hadn’t heard of Aspen Neuroscience.

[kaypeeoh]

I'm curious. What is "personalized cell therapy"? Is it stem cells? I've had good results with stem cells in my veterinary practice. It's well known that bone marrow is a rich source of stem cells. But fat contains a thousand percent more stem cells than an equal volume of marrow.

[Hidden in reply to kaypeeoh]

Pluripotent stem cells derived from the skin. They are calling it "personalized"

[kind2animals in reply to kaypeeoh]

They take cells from the patient and convert them into pluripotent cells that can be made into the cells that are needed. This has an advantage over previous methods, which used cells from donors, in that it solves the rejection problem and eliminates the need for immunosuppressant drugs. These “native“ self cells are also much more effective in making the complex connections that characterize healthy dopaminergic cells.

[dentonpark]

Persistence....Success

[Despe]

Good luck, CC! Hope you have more definite answers to your questions and pass them on. Your drive and determination are amazing!

Next appointment with our Vanderbilt MDS is in June. I can ask him about stem cell therapy.

[Hidden]

You are a rockstar!!! I just want them to offer the procedure to pwp who are in early stages. Basically if someone wants the procedure how do we make that happen? How can we help them get regulatory approval? They already had gained approval for Dr. Lopez so can we piggyback off that? If it’s a funding issue then we can try to address that. There’s millions of us with PD. We can raise money. Anyway good luck.

By the way Memorial Sloan Kettering just today posted on clinicaltrials.gov that they are recruiting for their stem cell clinical trial. 10 patients aged 60-76. This is the first time I wished I were 60.

[Hidden in reply to Hidden]

clinicaltrials.gov/ct2/show...

[Despe in reply to Hidden]

"Embryonic Stem Cell-Derived" . . .

[Hidden in reply to Despe]

Yep. Not the same technology as making pluripotent stem cells from the patient’s own skin cells. Perhaps it’s cheaper but there’s a risk of rejection. This is BlueRock’s big gamble.

[Despe in reply to Hidden]

It's quite a process to risk rejection. Pluripotent stem cell therapy is my preference, if that ever comes to realization.

[kevowpd in reply to Despe]

We need as many open avenues as possible to maximise our chances of success. If some people benefit from Embryonic cells then that is good, even if some do not.

(Very) Long term, PD will be more stratified and treatments will differ for different PWP, so it doesn't need to work in all cases for it to help.

[Despe in reply to kevowpd]

You are right, however, I (husband) wouldn't risk a major operation with questionable results.

[Parkinsonjisung in reply to kevowpd]

Embryonic cells are not a path forward. This has been proven by the transeuro trial where they've had to postpone like 80 surgeries due to a lack of available cells. Its simply not going to scale.

[kevowpd in reply to Parkinsonjisung]

Sure. It would be incredibly valuable to learn that it worked, though.

[Parkinsonjisung in reply to kevowpd]

Ya, thats pretty much the purpose of the trial and to refine the surgery procedure so once we have useful cells the rest will be in place.

[Hidden in reply to Parkinsonjisung]

Correct, embryonic is not going to work

[Hidden in reply to Despe]

Agreed

[Hidden in reply to Hidden]

I'm hoping for better. Pluripotent!

[Missy0202]

Way to go!! Good luck! Can't wait to hear about it!

[Astra7]

Well done.

[laglag]

This may be of interest to you.

davisphinneyfoundation.org/...

Davis Phinney (born July 10, 1959) is a retired professional road bicycle racer from the United States. He won 328 races in the 1980s and '90s, a record for an American, including two Tour de France stages. He has worked in media since retiring as a racer. He was diagnosed with Parkinson's disease at age 40.

[LeharLover62]

Great news! I would like to know if they need moral support, as stem cell therapy is often seen as controversial, but is probably our best hope to restore lost function, and I’m all for it!

[Hidden in reply to LeharLover62]

Research pluripotent. Derived from the recipient not embryos. Not controversial.

[Tayogi]

Kudos @cclemonade! You are relentless!!! Thank you for all that you are doing!

[Drummer67]

Great efforts cclemonade!!!!

[PalmSprings]

I appreciate your energy and efforts. I believe stem cell therapy is an answer to many things. I believe Dr Jeanne Loring could have something to offer for us with PD. I am interested in the autologous stem cell studies. Thank you for putting yourself out there and good luck!

[AngloAmericanGothic]

How do we follow this?. My pwp is v interested in this and we would both be interested if they were ever needing candidates for a trial. Nothing works for him now so he feels he would have nothing to lose if he were to try this. What kind of support do you need?

[Hidden in reply to AngloAmericanGothic]

mass general is looking for participants for a phase one. Not implanting in the brain but creating the pluripotent cell from the skin I believe. Please visit their website for more info. I will share whatever I learn here until my website launches. endparkinsonsproject.com

[parkylot in reply to Hidden]

Just to let you know. I contacted Mass General. I’m 9/10 years into PD. If anything comes of it, I’ll post my journey. Thanks for sharing. Joey

[kind2animals]

I used the link you provided and got an email address for this pre-clinical trial project. It turns out that this is a Harvard medical project being carried out at Mass General. I emailed them expressing my interest in participating. They replied to let me know that only that they are only accepting participants who live in or near Boston. They also wrote to remind me that “ We are currently preparing for a clinical trial to determine how safe and effective the procedure is. It will likely be some years before we have this information.”So the bottom line is the same. If you are really rich and can fund your own trial you can have this treatment now, but if you are just regular folks, you need to wait.

[Hidden in reply to kind2animals]

Interesting they said you have to live near Boston. They did not say that to me. Yes, Harvard & Mass General are linked. Regarding the "rich," he is a hero in my eyes. He generously funded the whole thing to advance science for people like us and he took the largest risk being the first one. Generous and brave. It is a reality that the "rich" fund most of science and we reap the benefits. I was told the trial is going to be 2 years and they need to prove the safety in a larger number of people for the FDA since the first trial proved it was safe but only in one person. Whoever participates in this preclinical is first in line basically for the next phase, phase 2.

[kind2animals in reply to Hidden]

I didn’t know that participation in the pre-clinical was a criterion for the trial although it is not surprising. I am not against rich people funding their own trials. Harvard has a trillion dollar endowment so I am not as impressed as you seem to be by the heroism of the fellow who made a trial for himself. Pardon me if I seem unhappy at the news that I’ll probably be dead long before they figure this thing out. Why can’t they make this therapy available under an emergency use authorization like they have done with the COVID vaccines?

[kevowpd in reply to kind2animals]

"Why can’t they make this therapy available under an emergency use authorization like they have done with the COVID vaccines?"

Because they don't yet know if it is safe or if it works.

[kind2animals in reply to kevowpd]

Oh, ok. Thanks for that brilliant bit of analysis. I feel like I’m a child in kindergarten again. Can you simplify that response. I am sure I don’t understand. You must be a teacher.

They don’t know if the Covid vaccine is safe or effective either, which is why it is being released under an emergency use authorization. They haven’t done the kind of trials that they say are necessary to prove a new drug. They openly admit that it will be two years before they can lift the emergency use designation and list it as an approved drug. I think Parkinson’s sufferers have an emergency need. And many like me would be glad to take the risk.

[kevowpd in reply to kind2animals]

I think you will find that each of the COVID vaccines that have received an Emergency Use Authorisation were tested on considerably more than one individual prior to the authorisation being granted.

[kind2animals in reply to kevowpd]

Yes but isn’t the risk also several billion times greater as there is this mad dash to get it into everybody on the planet ASAP. And even if they did test it on a few thousand people, what could they have learned about what might happen a few months or even a few years down the road.

[kevowpd in reply to kind2animals]

Ok, fine. You are correct. They should make available this procedure to all PWP around the globe for free based on the one moderately successful procedure they have undertaken to date. They should definitely not undertake any more trials prior to doing so as this would allow them to potentially refine the procedure and learn more about what actually works and what does not, and that would not be attractive.

[kind2animals in reply to kevowpd]

Great! Now you are characterizing my position by taking it to the most absurd extreme. I have suffered under the healthcare system for most of my life. It am not inspired with great confidence as a result of my experience. I have found that innovations in the science of human health are woefully slow to trickle down to the clinical level. Just by doing a modest amount of reading I have found that information takes about twenty years to make that trip. In just one example, in 1995 I first came across information about the relationship between the gut and the brain and began to learn about all the things that can be problematic with it. As I experienced symptoms that were undoubtedly connected to my development of PD I tried to raise the possibility with my doctors only to be met with everything from being ignored, to being ridiculed, to outright hostility. I also have a family full of doctors. A parent, uncles, cousins, a sibling who worked with Anthony Fauci at CDC. Another experience that doesn’t inspire confidence in the system. What I would like to see is a more systematic approach with a high degree of transparency, particularly with regard to Big Pharma’s role in determining where resources are placed, and the great probability that government bureaucracy is a drag on progress. I am reminded of the experience of Craig Venter, the American capitalist who accelerated the decoding of the human genome by roughly a decade, even as he met much resistance from the U.S. National Institutes for Health, who were more concerned about protecting their institutional prerogatives and who would get credit for the work than they were for serving the public.

[Hidden in reply to kind2animals]

"systemic approach with a high degree of transparency" Yes! "Big Pharma's role in determining where resources are placed" Exactly! "government bureaucracy is a drag on progress" Definitely! I agree with you 100%.

[Hidden in reply to kind2animals]

Participation is not a criterion. That is not what I said. But, if one participates in the pre-clinical there chance of getting in to the next phase is increased bc they will have already made the pluripotent cells. I personally truly feel your frustration and unhappiness. I recommend looking up people with Young Onset Parkinsons and you will suddenly feel more blessed.

[Hidden]

How did your call on the 26th go CC?

[Hidden in reply to Hidden]

It was excellent. 50 minutes of info. I will be talking to them again soon. I will message you about it.