Since my diagnosis in 2018, I have been particularly interested in stem cell therapy. There may be others, but I'm aware of two FDA trials being conducted in the United States. One by Blue Rock Therapeutics which is a division of Bayer and the other by Hope Biosciences in Texas.
Thanks to a post yesterday, I contacted Hope Biosciences and am likely to enroll in a trial there. However, I don't know much about the differences between the two trials and the types of cells they are using. Do any of you have any thoughts as to which of these two trials seem more likely to succeed? At this point I'm likely to enroll in whichever one I can get into first but I'm open to suggestion.
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jimcaster
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I recently signed up for the clinical trial with Hope Biosciences and I have my initial pre-screening visit on April 23. Stem Cell Therapy is an intriguing innovation. I will keep you posted.
Blue rock is "proper" stem cells. Stem cells are reprogrammed to be dopamine neurons and surgically transplanted in the part of the Brain that needs themHope (the clue is in the name) are mesenchymal cells. They are stem cells that at this stage can grow into anything. They are administered intravenously and left to work out for themselves what to grow into and where to go
Thanks, Richard. I did know about the mesenchymal vs "proper" cells as you describe them, but Hope (together with University of Texas-Houston) seems to have a decent track record. You have reaffirmed what I feel in my gut, but I'm still conflicted. Being hooked up to an IV seems a lot less daunting than brain surgery, especially if there's a fair chance of just getting the placebo in either case. Thanks for your input. I was going to send you a private message, but figured others would benefit from your input if I just posted the question.
Hope might do something, but it's not the dopamine neurons grown from stem cells we grew up with. See at about an hour inyoutu.be/ixXDHgXcUz0?si=tTh...
Actually if you're considering participation in a trial I'd watch the whole thing
You might want to keep an eye on Aspen Neuroscience as well. They're developing a process to cultivate a custom stem cell therapy by taking getting some cells via skin biopsy from the individual being treated and turning them into Induced Pluripotent Stem Cells (iPSCs) that can then be given back to the person.
They got clearance for a Phase 1/2a trial last year. Not sure where they're at with it. Saw a video presentation from them last year that looked very interesting and very promising. But, down the road quite a ways for general availability.
Good reminder! It was actually Jeanne Loring and Aspen who originally got me excited about stem cells years ago. I especially like that they use autologous cells which reduces or eliminates the need for immunosuppressants. However, it seems that they've been very slow to get moving. It's great to see that they're also in the game now.
Bluerock has shown an improvement of 23 points in the MDS-UPDRS Part III score for the patients in the phase I trial, which is absolutely massive. As far as I know Hope Biosciences doesnt have anything similar to show off (even if its only a phase I trial)
Hope Biosciences’s stem cell therapy for Parkinson’s disease saw its Phase Transition Success Rate (PTSR) rise nine points to 33%, following the successful completion of their Phase II trial.
The Hope study requires 6 IV injections, one per month, to get enough cells into your brain. Requires 8 trips to Houston. Be sure to check the travel expenses. For me, it would be about $20,000 for me and my wife.
The BlueRock study's entire injection is done during a single visit. Requires trips to New York City, but fewer visits than with Hope.
One of the issues is that I'm impatient. Hope is recruiting right now. Blue Rock is not, to the best of my knowledge. However, I'm still doing quite well and maybe should wait for Blue Rock or Aspen.
When I look at the Aspen clinical, it says it intends to recruit 9 patients and they are enrolling by invitation. This makes it sound like random patients like us are not needed yet.
Trial participation is not a queue-jumping free access to a guaranteed safe and effective new therapy. Looking back over our time with the disease, if you could have participated in every trial, how many successes? 0How many failures? 30? 40? 50?
I'm impatient as well and filled out paperwork for Hope Biosciences recently, I found out that Aspen is doing a clinical trial @ UCSF, which is near my home, They already have their 9 people signed up and part of their criteria is that you have an unequivocal response to Levodopa, which I do not have. My symptoms are getting worse by the day and I question if i do, in fact, get into the Hope clinical trial, would that disqualify me from entering the more data driven stem cell trials that use my own cells to turn into dopamine cells. I would certainly be disqualified. So the question is do I wait. in the meantime, while I am waiting, the quality of my life is deteriorating.
You might want to subscribe to a newsletter called THE NICHE, by stem cell biologist Paul Knoepfler of UC Davis
google Dr.Greg Eckel in Utah his clinic uses stem cells and apparently he had some success with it. Good luck to you. I’d like to look into that too. I’m just afraid it’s really expensive.
from what I have been able to find out it appears that he has been administering the stem cells intranasally and I am not finding a wealth of information on this method
I am flying from Australia in May for stem cell therapy in Antigua with Dr Chadwick Prodromos from New York he did Tony Robbins back.
I don’t have Parkinson’s I am going for other reasons who I suffer RLS if it help this I will let the world know .There are a lot of stem cell clinic in Antigua the mayor is trying to put a Antigua on the map for stem cell therapy they are allowed to use the most advanced treatments without the severe restrictions for FDA
What concerned me on reading some research, is that it seems like very few if any stem cells reach the brain when they use the IV method like Hope is.
(We did fill out some info on their website and get errors and no one has reached out to us, so I don’t havent asked them what they say about this, and don’t have any first hand info like others do.)
I wish all those the very best, however from my countless years of research, majority of studies show that very little if any stem cells get into the brain, as "LeharLover62" as already stated.
There are multiple reasons for the failure for penetration into the brain.
1. The "Blood Brain Barrier" permeability.
2. The size of the stem cells, this is extremely important and relevant, as most clinics do not discuss to anyone the size. Not the amount but the actual size of each stem cell being used.
3. The size is one consideration that determines how far they can travel throughout the body, as most get stuck in the lungs and other organs, as they travel through the cardiovascular system. This is critical for all patients to find out the size of the stem cells that they will be receiving.
blue rock (bayer's program) involves fetal cells. you will go to chicago or Irvine for implantation. It is a blind study so 50% chance of being the placebo. (Many universities across the country are sending their own testers.) You still have big patch of head shaved and a hole drilled into skull for injection into brain either way. if you are a lucky recipient, you take immunosuppressants for 1 year. (sugar pills if test dummy.). if successful results, the placebo group can get the treatment 1-2 years later. At least they will have had a little more practice!
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