I know this subject has been discussed in the past, but not recently. The most recent thread I can find is over 2 years old. Here goes...
My mom is 50 and was given a preliminary diagnosis of ALS about a month ago. She's fading fast. She can still eat and walk on her own, but she's beginning to hunch over and is losing strength and mobility. Of course I am desperate to find any tiny bit of hope so I used my super awesome Google skills and found this Hongyun Huang doctor in China who is offering stem cell transplants (for a lot of money) and I was wondering what the general PALS conclusion is on this. I read a lot of the patient files for ALS patients on their website and it looks like the benefits are short lived. One of your forum contributors said he knew someone who was getting this transplant annually and that it was working to keep him alive and high-functioning.
I am skeptical, as I should be, but I have to wonder if this is the right idea. The US has been so backwards when it comes to stem-cell research that I wonder if China's lack of religious fundamentalism has lead them to be further advanced when it comes to this sort of medical technology.
I'm not rich, I live paycheck to paycheck like most Americans, but I'm pretty sure I could raise this money and get the therapy. But is it worth it? If the transplant works and she improves or degenerates more slowly then are we going to be able to do this every year?
I have also emailed the University of Washington asking for her to be considered for the phase 2 trials for NP-001 and the phase 3 trials for Dexpramipexole. She is a recent diagnosis and can still swallow pills, her blood tests show normalcy (except for a recent clotting issue) so I hope she qualifies and can start one of these trials asap.
Is there anything else I should be doing? She is on Vitamin D and eats good foods (not vegan, but mostly natural and we are attempting to keep things preservative and additive free). Any suggestions?
My mom is 50 and was given a preliminary diagnosis of ALS about a month ago. She's fading fast. She can still eat and walk on her own, but she's beginning to hunch over and is losing strength and mobility. Of course I am desperate to find any tiny bit of hope so I used my super awesome Google skills and found this Hongyun Huang doctor in China who is offering stem cell transplants (for a lot of money) and I was wondering what the general PALS conclusion is on this. I read a lot of the patient files for ALS patients on their website and it looks like the benefits are short lived. One of your forum contributors said he knew someone who was getting this transplant annually and that it was working to keep him alive and high-functioning.
I am skeptical, as I should be, but I have to wonder if this is the right idea. The US has been so backwards when it comes to stem-cell research that I wonder if China's lack of religious fundamentalism has lead them to be further advanced when it comes to this sort of medical technology.
I'm not rich, I live paycheck to paycheck like most Americans, but I'm pretty sure I could raise this money and get the therapy. But is it worth it? If the transplant works and she improves or degenerates more slowly then are we going to be able to do this every year?
I have also emailed the University of Washington asking for her to be considered for the phase 2 trials for NP-001 and the phase 3 trials for Dexpramipexole. She is a recent diagnosis and can still swallow pills, her blood tests show normalcy (except for a recent clotting issue) so I hope she qualifies and can start one of these trials asap.
Is there anything else I should be doing? She is on Vitamin D and eats good foods (not vegan, but mostly natural and we are attempting to keep things preservative and additive free). Any suggestions?