For those who care for someone with Parkinson's disease
[Forum] [Home] [Help] [Search] [Register] [Login] [Books] [Commentary] [Contact] [Donate]
You are not logged in


Topic summit4stemcell Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2014.12.06 19:30
While I am so very happy for dkleinert and her husband doing well with their stem cell therapy, we do have to be careful. I don't want to rain on anyone's parade, but here are some facts from my looking into the place they went:

1. the website mentions having treated over 2,000 people: they have testimonials from less than 50. That's around 3% if I did the math right (a big if!)

2. One of their testimonials, from a family with an epileptic baby, is very compelling. The testimonial was done, I think, in 2005. I looked the family up, and the father has a youtube video done in 2012, in which he is supporting an epilepsy drug ...which leads me to think perhaps his son still suffers from epilepsy pretty severely. I do not recall him mentioning in the youtube video that his son had stem cell therapy as an infant.

3. The doctor at this facility dkleinert mentions has an interesting history. He was at one time married to Sally Struthers and had his operations in other countries. I don't want to rain on anyone's parade, so will leave you to google him yourself.

If you want to follow a stem cell group in the US, focused on PD specifically, check out this group:

www.summit4stemcell.org

They have raised over one million dollars recently to do their procedure on 8 PD patients. Here is a bit from the webpage:

"Summit4StemCell (S4SC) is a grass roots, volunteer fund raising organization supporting patient-specific stem cell-to-neuron research conducted by Jeanne Loring Ph.D. and Melissa Houser, M.D. S4SC operates under the nonprofit status of the Parkinson's Association of San Diego (PASD). Summit4StemCell inspired a partnership with PASD, The Scripps Clinic in La Jolla and the Scripps Research Institute in an effort to further the fight against Parkinson's through this promising research."

"Summit 4 Stem Cell Mission: To fund induced pluripotent stem cell research (iPSC) that will result in a treatment for Parkinson's while inspiring people with the disease to move beyond their physical limitations."

There is a lot of PD work going on out there:)

By dkleinert On 2014.12.08 00:20
I actually met Ken, the man whose son had epilepsy as a baby, and yes, he did have stem cell treatment when he was a baby. He had continuous seizures before the treatment, and after his stem cell treatment they stopped. His son is now 9 years old. Ken showed me his picture. Ken volunteers to come along to Mexico sometimes to talk with folks before they have the treatment if they have concerns. There is a lot of negative things on the Internet about the doctor, however, I know what the recovery that has happened for my friend in South Carolina, who had Parkinsons Plus, and to my husband so far.
I know everyone wants to not believe this is safe or possible.....I knew I took a risk posting here. I won't again.

By JulieB On 2014.12.08 09:24
Donna, I hope you keep coming back and keep posting. Everyone has their own journey and there are many people here who probably didn't post a word who are so happy for the results your husband has had!

I just read a remarkable book called "Destiny of the Republic" about how President James Garfield was shot just months after being elected, but it wasn't the bullet that killed him. It was the contaminated, repeated probing (to attempt to find the bullet) his doctors did for weeks on end, introducing infection and eventually led to his painful septic death. I mention this because Joseph Lister (now I know where the word Listerine comes from) was lecturing worldwide and telling doctors about the importance of using carbolic acid to "sterilize" instruments and surgical sites, but American doctors thought he was a quack and totally dismissed him. Had they listened and taken his findings seriously, James Garfield would probably have lived, and would have been a great president.

We never know what medical breakthroughs will be around the corner that are disbelieved today.

Please keep us updated on your husband's progress!

Hugs,

Julie xoxo

By makrivah On 2014.12.08 21:01
Please keep posting! Today's "it's impossible", is tomorrow's "ordinary." I am thrilled that your PWP is thriving. Keep sharing the news. When the time comes, we may choose your same path. Hope comes in many forms. God bless.

By Daybyday On 2014.12.08 21:09
Donna, please do not get offended by anyone showing skepticism. It's only natural when you hear something that sounds so wonderful. I would like to know what this treatment costs exactly and where is the clinic located in Mexico. Your husband and friend have made such remarkable progress; it is so very exciting for those who are suffering out there. We all need to hear there is research out there that is starting to show results. It gives great hope to all of us.

By lurkingforacure On 2014.12.09 08:33
Again, I am very happy for Donna's and her husband's improvement! I am just sharing that we need to be careful.

and Donna, I do have to wonder: if Ken's child is free of seizures, why in the world would he be promoting an epilepsy drug in a youtube video? Why would he not create a website, or be out there somewhere, proclaiming the wonders of his son's miraculous recovery from the horrible seizures he had?

I am so happy anyone is getting any relief from PD, no matter how:) I hope it continues and gets even better.

By carman96 On 2014.12.10 09:07
Donna we all DO want to believe this works. Please keep posting and let us know your husband's progress.
You did your research and went for it. I wish you all the best..
Some of us are more cautious and need more proof. Because of the expense and the traveling and uncertainty that it will work for our loved ones, it is kind of scary.
On their website they want you to call for more information. Me, I want to see statistics in writing specifically about PD, Not just testimonials from a few people.


© 2003-2016 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you