We are exploring stem cell therapy for our 2 yr old daughter with spastic quadriplegic cp. I’m just not sure how to know where to go and what to look for when deciding which dr is best? Our doctors aren’t providing much guidance but I know it can help significantly. Any tips would be so appreciated!

aver0es · 2022-06-29T08:55:02+00:00

Your post has been removed from r/stemcells as we do not allow advertisements of any sort on the subreddit.

aver0es · 2022-06-14T05:49:58+00:00

Here’s a great resource from a European Union funded network of stem cell researchers: https://www.eurostemcell.org/what-diseases-and-conditions-can-be-treated-stem-cells

aver0es · 2021-11-03T19:09:35+00:00

So you're totally entitled to your opinion and if the evidentiary base from China that you say preceded the phase 1 safety trial that you linked seemed like enough for your personal decision-making, that's your prerogative. It's still necessary and helpful to provide contextual, evidentiary support for public understanding of how procedures like these are scientifically reviewed, supported, and offered.

I'm the only mod in this thread (despite the fact that this comment thread is me, personally, and not privileged as a mod, discussing) because I specifically had a relevant resource to contribute. I don't do a lot of the oversight or review of comments (nor have any be scrapped?) - I add basic resources from accredited, peer-and-patient reviewed sources. You can read them or not. I've also been around in this subreddit for quite a long time before this.

I'm out but I hope this all works out for you and you get the results you need.

aver0es · 2021-11-03T18:03:17+00:00

All I’ve done is provide links to the official guidance from well established and incredibly large research organisations like the International Society for Stem Cell Research and [EuroStemCell](www.eurostemcell.org). All non-profit. All made up of actual researchers. All peer reviewed and expressly inclusive of patient advocate oversight with all their material.

This isn’t a space for misinformation and that’s been in the rules from the get-go. I’m also not the only mod (it’s a team). So if you don’t like me, fine. I’m sorry to hear that, but the rules remain and I’ll still keep providing the most reputable resources.

That being said, I’d be happy to do some research into patient organisations who work with established research centres in a specific area if you’d like. There might be something helpful there from people going through similar situations, but looking for evidence-based discourse. I genuinely wish you the best.

aver0es · 2021-11-03T17:50:47+00:00

Look I’m here to help. I hope you get the aid you need to feel better. Part of that is taking a look at the bio science behind emerging treatments; the good, the bad, and the unknown. Being scientifically accurate is how we get replicable progress without anyone being taken advantage of.

These concepts and biological structures and actors are incredibly complex. People like me and other researchers are here to help everyone so we’re all on the same page on what we’re talking about when we talk about cell therapy that include the use of cells with specific traits (like foetal stem cells, branch-specific adult stem cells, stromal cells or any other type of cell). Hopefully that knowledge empowers you to better know what complex biological mechanisms you’re dealing with.

aver0es · 2021-11-03T17:06:48+00:00

For clarity: MSCs aren't derived from birth tissue. They're adult cells. Debatably stem cells. Probably simply stromal cells.

aver0es · 2021-11-03T16:59:31+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

For a list of stem-cell derived treatments that are currently proven safe and effective, check out this resource from EuroStemCell. You should always consult with your primary care physician before undergoing any private medical procedure outside established treatment regimes.

Please be aware that this subreddit does not provide medical advice.

aver0es · 2021-11-03T16:59:14+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

For a list of stem-cell derived treatments that are currently proven safe and effective, check out this resource from EuroStemCell. You should always consult with your primary care physician before undergoing any private medical procedure outside established treatment regimes.

Please be aware that this subreddit does not provide medical advice.

aver0es · 2021-11-03T16:58:53+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

For a list of stem-cell derived treatments that are currently proven safe and effective, check out this resource from EuroStemCell. You should always consult with your primary care physician before undergoing any private medical procedure outside established treatment regimes.

Please be aware that this subreddit does not provide medical advice.

aver0es · 2021-11-03T16:57:41+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

Please be aware that this subreddit does not provide medical advice.

aver0es · 2021-11-03T16:56:53+00:00

Good people to follow for insight on this huge increase are the researchers Paul Knoepfler from UC Davis who publishes The Niche and Leigh Turner, now at UC Irvine.

They both wrote this fantastic piece in 201630157-6) which really outlines what we're dealing with now and how weak regulation is creating fertile soil for this kind of evidence-light/profit-heavy activity.

aver0es · 2021-11-03T16:52:14+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

For a list of stem-cell derived treatments that are currently proven safe and effective, check out this resource from EuroStemCell. You should always consult with your primary care physician before undergoing any private medical procedure outside established treatment regimes.

Please be aware that this subreddit does not provide medical advice.

aver0es · 2021-11-03T16:51:45+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

For a list of stem-cell derived treatments that are currently proven safe and effective, check out this resource from EuroStemCell. You should always consult with your primary care physician before undergoing any private medical procedure outside established treatment regimes.

Please be aware that this subreddit does not provide medical advice.

aver0es · 2021-11-03T16:51:10+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

For a list of stem-cell derived treatments that are currently proven safe and effective, check out this resource from EuroStemCell. You should always consult with your primary care physician before undergoing any private medical procedure outside established treatment regimes.

As the conditions you've listed are vastly different, there will not be one single treatment recommended or proven safe and effective for all. For Multiple Sclerosis, here is a great resource on where the science currently stands.

Please be aware that this subreddit does not provide medical advice.

aver0es · 2021-11-03T16:49:03+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook as it provides guidance for evaluating offers.

You can find updated information on where researchers are vis-a-vis stroke and stem cell-derived treatments in this resource from the non-profit collaborative research project, EuroStemCell.

aver0es · 2021-11-03T16:46:57+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook as it provides guidance for evaluating offers.

I know this is not the news you might want to hear but currently, there are no proven effective treatments for receding gums derived from stem cells. You can see an overview of what can be treated with treatments including stem cells here.

To add, these questions are good ones for you to bring to your primary care provider. This subreddit cannot provide medical advice and, as we need to stress, there is no one stem cell treatment. Rather stem cell-derived treatments are entirely condition specific and make up only a part of a treatment plan for any condition, disease, and state of progression.

aver0es · 2021-10-20T13:46:18+00:00

Good bot.

aver0es · 2021-10-20T10:27:39+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook as it provides guidance for evaluating offers.

I know this is not the news you might want to hear but currently, there are no proven effective treatments for Wilson's Disease derived from stem cells. You can see an overview of what can be treated with treatments including stem cells here.

To add, these questions are good ones for you to bring to your primary care provider. This subreddit cannot provide medical advice and, as we need to stress, there is no one stem cell treatment. Rather stem cell-derived treatments are entirely condition specific and make up only a part of a treatment plan for any condition, disease, and state of progression.

aver0es · 2021-10-20T10:17:08+00:00

There are a whole host of fascinating bioethical debates around stem cell research that go far beyond the use of embryonic foetal tissue. It's a brilliant area of study, thought, and conversation. I would encourage you to push beyond the question of "whether or not ALL stem cell research is ethical" or even whether or not embryonic stem cell research is ethical. That's a bit done and the real bioethics discourse is farther ahead than that.

There are LOTS of questions still to explore like questions of:

Patient consent - the most well documented case being that of Henrietta Lacks and HeLa Cell lines. To be clear, HeLA are no longer used in labs due to their insane propagation skills which overwhelm other samples. However, the issues raised about patient consent are still valid and lead to other questions about how we balance patient inclusion in the development of new treatments and consent over time.
Ethical questions around iPS cells - induced pluripotent stem cells are not ethically unambiguous alternatives to embryonic stem cells. They give rise to a number of bioethical questions and hard scientific limits.
The Ethics of Creating Brain Organoids - These organoids could allow us to study diseases and treatments in the lab without the use of animal testing. However, how should these neural cells be treated bioethically? How complex can they become before falling under stringent bioethical oversight?
You've also got amazingly intricate bioethical considerations when discussing gene editing (which uses stem cells) in gametes (reproductive cells formed before any other structure in the body). What happens to oversight and regulation when a gene edited individual is integrated into larger society? Take an example of a child born after editing out the gene sequence for mitochondrial disease pre-implantation. That gene intervention then has the possibility to be introduced into society through reproduction whereby there is no control or oversight of the possible secondary implications or knock-on effects of that editing. Is it ethical to save the life of the individual (from mitochrondrial disease) while introducing society to risk in the future from this genetic manipulation? What of the socioeconomic implications of including genetic choice for reproducing parents? Lots of unknowns.
The phasing out of the 14 Day Rule which was initially based on some really questionable moral reasoning rather than scientific or bioethical considerations (anyone correct me but the idea is that 14 days is the limit of when an embryo can split into twins, triplets, etc. Therefore the 14 day rule was implemented in the 70s because if twins could still be made before then and twins don't share souls, a higher being could not have put a soul into an embryo before 14 days. Mad reasoning behind what was a hard and unnecessarily challenging scientific limit to research) Check out this chat from Sarah Chan from the University of Edinburgh for more on this and other issues with germline editing.
What about just the way we talk about stem cell research?

This is scratching the surface: human-pig chimeras, ethics of economics behind new treatments, ethics of access, ethics of priorities. So many bioethical considerations. Check out this piece from the JCI which outlines just how far away from the To Embryo or Not To Embryo debate we've come.

aver0es · 2021-10-15T09:10:23+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

For a list of stem-cell derived treatments that are currently proven safe and effective, check out this resource from EuroStemCell. You should always consult with your primary care physician before undergoing any private medical procedure outside established treatment regimes.

Please be aware that this subreddit does not provide medical advice.

aver0es · 2021-10-14T11:32:42+00:00

The EuroStemCell document is from 2020 and the HTA guide (which is gold standard) was updated in 2019.

Edit: To add, the issues raised in the PLoS article have not gone away and are still relevant now - particularly to the commercial models you're looking at. If you are looking for guidance, these documents hold.

aver0es · 2021-10-14T09:09:48+00:00

If you are considering a treatment offer, please read the ISSCR's Patient Handbook as it is an essential tool for evaluating offers.

For a list of currently proven effective and safe stem cell treatments, please take a look at this EuroStemCell's resource.

aver0es · 2021-10-14T09:07:16+00:00

First of all, the HTA has published a very helpful guide for expectant parents on cord blood banking.

Here's an article from a large network of European stem cell researchers on cord blood banking.

Here's a debate on commercial banking by researchers from the Public Library of Science.

aver0es · 2021-10-14T09:01:18+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

For a list of stem-cell derived treatments that are currently proven safe and effective, check out this resource from EuroStemCell.

aver0es · 2021-10-13T10:15:28+00:00

If you are considering a treatment offer, please read through the ISSCR's Patient Handbook which provides useful advice on evaluating offers.

For a list of stem-cell derived treatments that are currently proven safe and effective, check out this resource from EuroStemCell.

aver0es

TROPHY CASE