NorCal SCI heading down to Fresno to meet up with other disability resource/support groups

NorCal SCI's Nick Struthers has filled up his gas tank for a trip to Fresno today where he is to drop by the Resource for Independence Central Valley as well as join the meeting of the San Joaquin Valley Rehab Center SCI Support Group.

As we have chronicled our past field trips to the various ILCs and support groups, our main goals are to better understand how these organizations operate and also share with them our vision to collaborate with them and help their SCI community thrive.  

Nick will be meeting with Larry Wanger, the Executive Director of RICV.  They've been operating since 1976 and their service area includes the five counties of Fresno, Kings, Tulare, Madera and Merced.

At the San Joaquin Valley Rehab Center SCI Support Group, he will be welcomed by Benilde Leal who leads that group which meets monthly in the Education Room of the Rehab Center.  There, Nick will introduce everyone to NorCal SCI and join their conversations so that when we come across individuals with SCI from that area, we can refer them to the appropriate support groups (there are actually two of them in Fresno).

Look for Nick to write a summary of his trip to Fresno next week.

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.

SCI RESEARCH: Where are we and what's being done?

NorCal SCI has written about the various studies going on to cure paralysis and while finding a cure is proving to be more elusive and challenging than previously thought, it is amazing to learn about the various novel approaches scientists are taking to unlock this mystery.

We've developed a short list of some interesting reads on such approaches:
The mind-reading devices that can free paralyzed muscles
Stem Cell Implants Improve Monkeys’ Grip After Spinal Cord Injury
BioArctic's Biodegradable Device Could Regenerate Spinal Cord Injury
Discovery offers new genetic pathway for injured nerve regeneration
Effects of epidural stimulation on people with spinal cord injury
Hope for recovered motor function in patients with chronic spinal cord injury
Unrecognized Nerve Survival After Spinal Injury Could Improve Recovery Prospects

You can also become better educated about clinical trials and these two articles do a good job of that:
Spinal Cord Injury Research Trials: An Overview
Interested in volunteering for a clinical trial?

And finally, what's on a lot of people's mind is:
SCI Research Trials and How to Get Involved

City of Sacramento's Rock N' Roll Yosemite registration now underway

The City of Sacramento's Access Leisure program's plans are rolling for this spring excursion May 14-17 to experience the sights, sounds and natural wonders of Yosemite National Park. This four (4) day, three (3) night tour will utilize hand cycles to tour the valley floor, including educational programs and is specifically designed for physically-challenged individuals.

Again this year, there will be Adaptive Rock Climbing sessions led by the Yosemite Mountaineering School and Mark Wellman who has scaled Yosemite’s granite monoliths including El Capitan and Half Dome and served for several years as a park ranger after sustaining a spinal cord injury.  Participants should be in good physical condition and able to cycle up to 15 miles at a leisure pace to be able to enjoy this activity.


The cost for this event is $450 and includes: housing, meals and all program activities. Participants must be 21 years of age. Space is limited to 15 cyclists. For further information/questions contact: Jenny Yarrow - ; (916) 808-6017 or Rick Mason –

You can read Bob Vogel's New Mobility magazine feature article from Oct. 2016 on Rock N' Roll Yosemite for a first-hand account of his experience.  

SCI-FIT founder to speak at March 19 Sonoma-Marin SCI Support Group meeting

We spilled the beans last week about SCI-FIT founder, Dan Dumas' assessment of opening a new location in Sonoma County and he will now be the guest speaker of the Sonoma-Marin SCI Support Group on Mon., March 19th from 4-5:30 p.m. to address that discussion.

SCI-FIT has locations in Pleasanton and Sacramento and a new location in Fresno will be opening soon.  At the meeting, Dan will discuss SCI-FIT's philosophy and approach to non-traditional spinal cord injury rehabilitation.

The meeting is held at the Clubhouse at the Azure apartment complex, 5 Indigo Drive, Petaluma.  For more information, please contact Stan at (707) 774-6466 or by e-mail at

Rustic & accessible lodging with the grandest view

We usually don't find lodging that combines rustic and accessible elements available to wheelchair users but leave it up to our friend, Bonnie Lewkowicz, to share this little lodging gem with us.


Secluded among the trees on the upper south slope of Mt. Tamalpais, the historic West Point Inn was a brief stop on the “Crookedest Railroad in the World”, where passengers could meet a stagecoach bound for the beach. The railroad is gone now, but the West Point Inn remains as an "off the grid" haven for hikers and a monument to the rich historic heritage of our region. You can enjoy sweeping panoramic views of the East Bay, parts of San Francisco, the Marin Headlands, one tower of the Golden Gate Bridge, and out over the Pacific Ocean.

   The Emig Cabin

The Emig Cabin

The best part is the Emig Cabin, a purposefully built accessible cabin (the other cabin and Inn rooms are not accessible) was built in summer 2017 and features a private bathroom with a roll-in shower, a double and twin bed, and a small porch.  Unlike the other cabins or guest rooms at the Inn, the Emig cabin has electricity, heat, and hot water. 

But the views are truly to die for, so don't go expecting a hotel experience.  It's a cabin that has been made tremendously accessible.  It’s best to make reservations by calling the innkeeper, 415-388-9955. Rates for non-members are $50 per person and require a two-person minimum per-cabin / per-night.  You can read more about the cabins and accessibility features HERE.

SCI Support Group meetings in Davis, Solano County, Pleasanton & Berkeley

This is one of those busy weeks in the month when four separate SCI Support Group meetings will take place and we hope by making you aware of them, you'd attend the appropriate one near you.

On Wed., March 7, the UC Davis Hospital SCI Peer Support Group will meet from 3-4 p.m. in the Basement Auditorium at 2315 Stockton Blvd, Sacramento.

Also on Wed., March 7, the Solano County SCI Active Network Peer Connections will hold its meeting from 6-8 p.m. at the Solano Community Foundation, 744 Empire Street, suite #240, Fairfield.

On Thurs., March 8, the East Bay SCI Support Group Meetup will take place from 5-7 p.m. at the SCI-FIT facility located at 3283 Bernal Ave., Suite 105, Pleasanton.

Finally, on Thurs., March 8, the Berkeley Spinal Network is holding its monthly meeting from 6-8:30 p.m. at the Ed Roberts Campus, 3075 Adeline St., Berkeley.

For complete details on each of these meetings, consult our CALENDAR.

Uber slapped by class-action lawsuit for lack of accessibility

Disability Rights Advocates (DRA) filed a major class-action lawsuit last week against San Francisco-based Uber challenging the popular ride-sharing service’s lack of wheelchair-accessible vehicles.


The lawsuit was joined by the Independent Living Resource Center in San Francisco, Community Resources for Independent Living, and three individuals who use wheelchairs.  Given the vast coverage of Uber's service throughout the country, the ramifications are simply huge for Uber as well as the disability communities across the U.S.  

The case challenges Uber’s failure to provide wheelchair-accessible service as a violation of California's anti-discrimination law. Wheelchair users cannot rely on Uber as a transportation option because wheelchair-accessible Ubers are rarely, if ever, available. Although Uber advertises a wheelchair accessible service (“Uber WAV”) in the Bay Area, investigations found that in Alameda County, Uber WAV service is simply not available. In San Francisco, 80% of the time, Uber WAV service is unavailable. When it is, a customer may wait as much as 14 times longer than they would for a non-WAV Uber ride.

Uber is already facing litigation regarding its failure to provide WAV service in a number of other major cities in the U.S., including New York City, Washington, D.C., and Chicago.  Their spokesperson released a statement insisting that “We take this issue seriously, and are continuously exploring ways to facilitate mobility and freedom via the Uber App for all riders, including riders who use motorized wheelchairs.”

Asterias stem cell clinical trials continue on; no ground-breaking results yet

Asterias Biotherapeutics announced last week that it has now completed injection of stem cells in 25 patients with C-4 to C-7 levels of injury who have reported no serious side effects and that in more than 90 percent of the patients, the cells appear to show signs of engraftment.

Including the five subjects from the study initially led by Geron Corp., that makes 30 subjects injected with anywhere from 2 million to 20 million stem cells.

Thus far, the early results are pointing toward improvements in upper extremity motor function, with 75% reporting improvement of one motor level and 20% with two motor levels.  It means that a lot of work still remains in finding ways to create significant improvements in function for the SCI population.

The Asterias trials are funded by a $14.3 million grant from the California Institute for Regenerative Medicine (CIRM).  It has invested over $61 million thus far in SCI research with Asterias receiving the largest portion.  The agency has already awarded over $2.5 billion of its $3 billion budget across various other studies.

PVA hosting annual Awareness Fair on April 19 in Palo Alto

The Bay Area and Western Chapter of the Paralyzed Veterans of America is hosting its annual Awareness Fair on Thurs., April 19 from 11 a.m. to 2 p.m. at the Palo Alto Veterans Hospital featuring exhibits aimed to improve quality of life through innovation and recreation.

The theme this year is “Get Active Stay Active – Through Innovation and Recreation” and there will also be a clothing drive to help support PAVA's G.I.V.E. (Goods Inspiring Veterans Everywhere) program.

The fair will be held on the campus located at 3801 Miranda Ave., Bldg 7, Palo Alto.