First US Parkinson's Patient to receive Pluripotent Stem Cells was in 2017. Mass General needs funding.

giving.massgeneral.org/park...

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[Hidden]

If you have $18 million dollars to donate then they might do the procedure on you. Makes me furious. And I wonder how the guy is doing now? At 18 to 24 months after the procedure it looks like he was improving. Wonder if he is drug free and fully recovered.

[Hidden in reply to Hidden]

Tonight I started looking online for his contact info. in hopes of asking him questions prior to contacting the doctor. Ask how he is doing and if he is still funding or intending to fund further trials. (how I will tactfully ask that if I manage to contact him is yet to be determined) I just wrote to Mass General to ask the status (although I pretty much know the answer on that) and to ask the funding needs and if MJFF or other foundations are involved. And then I wrote (again) to MJFF to ask if they are funding this and if not, why. I absolutely hate politics and am not a political person (bc I can't handle the insincere BS from all angles) but we need to get politicians involved.

[Hidden in reply to Hidden]

Let us know what you find out please. I fear it may be years before it’s available to us all if ever. I hope I can hang on till then in terms of functionality.

[Hidden in reply to Hidden]

I also just wrote to Jimmy Choi about this since he is a very visible PWP and asked if he is aware of it and expressed that it needs funding. He has raised $500,000 for MJFF. I don't know if we can get therapies in time for us but damn we need to try. My twins are turning 11 on Wednesday. I completely sympathize with what you are saying.

[Hidden in reply to Hidden]

Till then aerobic exercise is the only thing shown to slow or even halt progression of PD. Particularly biking. I’ve been doing it religiously every day for over two months and my balance and gait are almost back to normal and freezing is gone. Only the tremors in my hands remain. Hopefully I can keep it up and hold the monster at bay. Exercise is the most important medication available to us

[rescuema in reply to Hidden]

statnews.com/2020/05/12/med...

[Hidden in reply to rescuema]

Great find rescuema. Doesn’t look like stem cell treatment cures or reverses PD but stabilized it. Lopez is still on meds. That said he is still alive and active which is a win. But it’s an expensive procedure so maybe only the wealthy will benefit. If the do the procedure in its early stages that would be amazing to freeze or reverse PD. I pray this technology becomes cost effective and available to us all very very soon.

[jimcaster]

It appears that your donation goes generally to Mass General unless you specifically designate a particular program under where it says "Additional Information."

[Hidden in reply to jimcaster]

Important point! I don't have fundraising experience but we need to get behind this. I will do what I can.