East Bay Support Group holds yet another informative meeting

The East Bay SCI Support Group met on Thurs., March 8th at SCI-FIT in Pleasanton with some new faces as well as old ones returning for the group’s third meeting.  Much of the meeting was spent talking about a topic that always gets a lot of interest:  stem cell technology.

It was SCI co-founders, Nick and Franklin’s third such meeting and though it was a smaller group than the one in January, we were quite thrilled with the participation of Trevor, who had suffered a Traumatic Brain Injury, and his mother.

The meeting got started right away talking about the hot potato topic and that was stem cell therapy in other countries.  This subject has always gotten a lot of reaction no matter what group we’ve visited and, in particular, the idea of going to another country to seek stem cell transplant therapy has always intrigued people.

Typically, we’ve discussed the lack of scientific-based evidence of improvements in such procedures taking place in countries such as China, India, Thailand and Panama to mention a few.  By chance, Steven Sanchez was also in attendance.  Steven was Nick’s roommate at Santa Clara Valley Medical Center where they received their care and rehab following their spinal cord injury.  Steven had travelled to China some 12 years ago and received stem cell therapy at a cost of $20,000 that he felt was a big mistake in retrospect as it didn’t improve anything for him.  He did acknowledge that the whole stem cell field was still relatively new back then and there was still a lot for scientists to understand about it.

At the last meeting in January, we also had another participant who had twice travelled to Panama and received stem cells to help with her Multiple Sclerosis (MS) symptoms.  The results were short-term gains at best and she has not gone back there again.

At last week’s meeting, one of the participants who was injured in 2017 was researching Panama as a place to go for stem cell therapy.  His thinking was that he doesn’t want to have any regrets 10 years from now for not trying it if it may help him right now and felt it was worth the risk. From what he had gathered, they were doing umbilical cord stem cell therapy at doses of up to 160 million cells. Actor Mel Gibson had made headlines when he revealed taking his ailing father to Panama for such therapies and had credited them with his father’s recovery from near death.

Nick informed the group about Reeve Foundation’s great book “Don't Call It A Miracle: The Movement To Cure Spinal Cord Injury” which explains the basic biology of the injured cord, what the basic approaches the scientists are taking to heal, mend or bypass the nervous system and what you, as a non-scientist, can do to speed things along.  It is a wonderful read to really become familiar with SCI and all the novel approaches being taken to develop cures.  It is available free of charge by the Reeve Foundation.

Coincidentally, Trevor and his family have also been interested in taking part in a clinical trial at UCSF Hospital as well as checking out other venues such as Craig Hospital in Colorado.

Switching topics, Steven, who is employed by Emeryville-based exoskeleton maker, suitX, did a great job of summing up the current state of the marketplace for such devices and the challenges being faced by all the companies in marketing exoskeletons. There still needs to be a lot of testing before anything becomes affordable enough as well as commercially viable.

We love attending these types of support groups as they become a fantastic environment to ask each other questions and learning what others are doing to deal with their injuries.  There’s never a bad idea but you always leave becoming better informed about what your fellow peers are doing to improve their lives.