Ian Mackay to visit and speak at Valley Medical Center on Nov. 2

If you haven’t heard of Ian Mackay, then we don’t know where you’ve been. But, if you really wanna know, you have a chance to meet him in person on Fri., Nov. 2nd as he visits his former rehab digs at Santa Clara Valley Medical Center in San Jose.

   Ian and his mother, Teena

Ian and his mother, Teena

Ian, a C2/ASIA A quadriplegic since 2008 due to a devastating bicycle crash, will talk about technology for when he’s in his wheelchair, in his bed and his brand new “smart home” that he and his family have designed and erected recently. You can learn more about Ian and his cause at www.iansride.com.

He was injured when he was a student at UC Santa Cruz and was taken to SCVMC for his rehab and then moved with his family to the Pacific Northwest following his discharge. Since then, the dreadlocked 36-year-old has made quite a name for himself by becoming an advocate for accessible trails across the country while learning how to use technology buried deep in the iPhone to make its features more accessible to users with physical disabilities.

In 2016, he rode his power wheelchair across the state of Washington from North to South — a distance of some 340 miles covered in 12 days.

Ian will speak at 12:30 p.m. in the 3rd floor dining room of the Sobrato Pavilion at SCVMC, 751 S. Bascom Ave., San Jose. He will also be at the Abilities Expo in San Mateo on Sunday if you’d like to meet him.


Santa Clara County Supervisors vote to advance scoping of Vasona Lake accessibility project

In yet another positive step toward making water-based activities at the Los Gatos Vasona Lake accessible, the Santa Clara County Board of Supervisors voted last week to approve referral to the administration to report to the Board of Supervisors by December a cost estimate and plan for improving access.  This motion was put forth by Supervisors Ken Yeager and Mike Wasserman.

While this represents yet another hurdle that’s overcome, the real concern now becomes the length of time and cost it would take to make the work a reality.  This referral asks for an analysis of what it would take to equip Vasona with the necessary facilities to provide inclusive access to boating facilities for the disabled community.  The report back should include an analysis of costs, a possible plan and timeline for implementation of the project, and options for how the project could be funded (e.g. through County General Fund dollars or the Park Charter Fund).  As one of the few County parks located in the urban core, Vasona is the County’s busiest day-use park, serving 650,000 visitors per year.  It’s also one of the few County parks that offers opportunities for water activities.

The movement on this issue followed a meeting NorCal SCI co-founders Nick and Franklin had with Supervisor Yeager in September where they made the case for complete access at all Santa Clara County parks and lakes.  While this is a small, yet important step in that process, there is more heavy lifting required as it relates to the rest of the parks and lakes in the county.

Somewhat related to this initiative, the second annual Day on the Lake has been announced for Sat., June 8th which will be held at Vasona Lake.  The first meeting of the planning committee took place last week which involved Santa Clara Valley Medical Center representatives, NorCal SCI co-founders and Vasona Lake personnel. 

NorCal SCI is grateful to Supervisors Yeager and Wasserman for fast-tracking this issue through the Board’s busy agenda.  We will continue our efforts to meet with every supervisor as part of the broader discussion involving the overall accessibility at all County facilities.

THIS WEEKEND: Abilities Expo opens up in San Mateo

The country’s largest touring disability show will pull into San Mateo Oct. 26-28, featuring nearly 90 exhibitors and many activities, workshops, demonstrations and a great opportunity to learn more about a wide array of local organizations dedicated to serving the needs of the disability community.  This show will be an important one to attend as it appears there will not be a stop in Northern California in 2019.

   Wheelchair dance team, The Rolletts will hold several performances.

Wheelchair dance team, The Rolletts will hold several performances.

NorCal SCI will be attending the Expo featuring its own exhibit, so we urge you to stop by and meet the co-founders and other contributors.  Be sure to register for free in advance so you can quickly zip into the exhibit hall.

One of the fun highlights is sure to be the Adaptive Climbing Wall that will be on display and open for participants to try out.  And there are lots of demonstrations of adaptive activities available for you to check out, including archery, yoga, wheelchair tennis, rowing, sailing, dancing as well as areas for children to play.

Workshops on accessible housing, travel, sexuality, medical marijuana and lots more topics are scheduled throughout the day and not to be missed.

Abilities Expo will be held at the San Mateo County Event Center’s Expo Hall, 1346 Saratoga Dr., San Mateo.  Parking is $12 per day.

SEARCH FOR SCI CURE: small molecule might pack a heavy punch in recovery

Could a small molecule complement regenerative therapies in spinal cord injury? Researchers from Boston Children’s Hospital have identified a small molecule drug with the potential to restore the ability to walk in patients with spinal cord injury.

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A recent study, published in Cell, suggests a systemically given small molecule could revive neural circuits in mice with spinal cord injury, restoring their ability to walk. The research, which was carried out at Boston Children’s Hospital, could complement regenerative therapies, aiding those with paralysis caused by spinal cord injury.

The compound, CLP290, is known to activate the protein KCC2, and was demonstrated to allow paralyzed mice to regain stepping ability within 5 weeks of treatment. “For this fairly severe type of spinal cord injury, this is most significant functional recovery we know of,” commented lead author, Zhigang He.

“We saw 80 percent of mice treated with this compound recover their stepping ability.”

The research was inspired by successful epidural electrical stimulation-based methods, which are the only treatments found to be effective in spinal cord injury patients. The researchers selected compounds known to both cross the blood–brain barrier and alter the excitability of neurons. Each compound was administered to mice that had severe spinal cord injury with some nerves intact, via intraperitoneal injection. The groups were treated for 8–10 weeks.

CLP290 was shown to elicit the most potent effect, enabling paralyzed mice to regain stepping ability within 4–5 weeks of treatment. The two relevant hindlimb muscles were shown to regain activity via electromyography recordings, and the walking scores remained higher than the control group for 2 weeks after treatment ended.

After a spinal cord injury, research suggests the inhibitory neurons produce far less KCC2, which stops them from properly responding to signals from the brain. This results in the neurons responding only to excitatory signals but not inhibitory signals.

As the neurons themselves are inhibitory, the over-firing of excitatory signals results in a general inhibitory signal. Restoration of KCC2 is thought to restore function of the inhibitory neurons to receive inhibitory signals from the brain, shifting the overall circuit back towards excitation.

“Restoring inhibition will allow the whole system to be excited more easily,” He explained. “Too much excitation not good, and too much inhibition is not good either. You really need to get a balance. This hasn't been demonstrated in a rigorous way in spinal cord injury before.”

The team is now investigating other compounds that act as KCC2 agonists, hoping that KCC2 restoration combined with epidural stimulation could maximize a patient’s recovery following a spinal cord injury.

“We are very excited by this direction,” concluded He. “We want to test this kind of treatment in a more clinically relevant model of spinal cord injury and better understand how KCC2 agonists work.”

This article appeared on https://www.rx-network.com/ 

Nov. 8 webinar: Shaping the SCI Research Landscape: How Consumers Can Make a Difference

The Spaulding New England Regional Spinal Cord Injury Center (SNERSCIC) will present a webinar on Thurs., Nov. 8th on "Shaping the SCI Research Landscape: How Consumers Can Make a Difference" presented by Dr. Chloe Slocum, a Staff Physiatrist, Spinal Cord Injury Medicine at Spaulding Rehabilitation Hospital.

Dr. Slocum will explore historical perspectives in spinal cord injury (SCI) research and examine how consumer feedback and input has been integral to the current research landscape. She will review channels and methods by which consumers can continue to play an active role in dialogues around current and future SCI research and contemporary findings on barriers and facilitators for clinical trial participation for persons with SCI.

   Dr. Chloe Slocum

Dr. Chloe Slocum

The live webinar is part of SNERSCIC's Knowledge in Motion SCI Lecture/Webcast Series and will take place from 3:30-5 p.m. PST.  CLICK HERE to register for the webinar.

The overall goal of SNERSCIC is to provide a multidisciplinary comprehensive system of care for individuals with SCI as a basis for conducting research that extends the existing evidence base for SCI rehabilitation. Their focus is health, function and technology, especially for the most vulnerable, to empower individuals with SCI to lead fulfilling and meaningful lives.

They also have various SCI-related studies for which they need volunteers.  For a list of their current studies, CLICK HERE.

SF Spinal Network Oct. 25 meeting to feature speaker on Maintaining Health After Injury

   Darrell Musick

Darrell Musick

The folks at the San Francisco Spinal Network have a great topic paired with a well-qualified speaker for their Thurs., Oct. 25th meeting, featuring Darrell Musick who will be talking about "Maintaining Health After Injury." Darrell is currently VP of Clinical at Ekso Bionics but more interestingly, he was the Director of Physical Therapy at Craig Hospital in Englewood, Colorado from 2005 through 2010 and previously the Physical Therapy supervisor of the spinal cord injury unit at Santa Clara Valley Medical Center in San Jose from 1992 to 2005. So, he’s very well-qualified to speak on this topic.

The meeting runs from 6-8:30 p.m. and is held at the Independent Living Resource Living Center located at 825 Howard St., San Francisco.  Food and beverages will be provided. RSVP to Matt Tilford at matt@applewesthms.com or at (209) 765-0292.


Survey needs input from ostomy/urological medical supply users

This survey has been put together by United Spinal Association’s Access and Care Coalition, which consists of patient, clinician, physician, consumer and disability advocates, as well as urological and ostomy medical technology suppliers and manufacturers. Their mission is to advocate for policies and programs that ensure consumer access to medical supplies under Medicare, Medicaid and private insurance.

Furthermore, they collaborate to secure health policy that facilitates the provision of high quality care and maximizes function and independent living for people with disabilities and chronic conditions. They focus on helping to provide people with disabilities and chronic conditions with their choice of, and access to, the prescribed and medically appropriate urological and ostomy medical technology and supplies.

The survey should take no more than seven minutes to complete and you may take it HERE.

New Smart Wheelchair Cushion to Address Pressure Ulcers

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I am sure by now you’re thinking this is a joke but read on because surely you must be thinking there’s no way this issue can be resolved. Can you believe it though if it were true? The long-term effects of sitting in a wheelchair can be painful. People who use wheelchairs can get muscle deformities and even serious injuries. Wheelchair injuries and pains, such as pressure ulcers, normally hit people who spend a significant amount of time in wheelchairs. Bad posture is another major challenge for people who use wheelchairs because they are not able to change their sitting position.

Fortunately, an American University has managed to address this big wheelchair issue. This year, the University of Texas Arlington made a major breakthrough in the wheelchair technology space. A team of researchers from the University of Texas has developed a smart seat cushion that can help wheelchair users prevent the negative effects and injuries caused by sitting in a wheelchair for a long time.

Read the rest of this report HERE.

One Inspiring Evening: Strong show of support at NorCal SCI's Inaugural Fundraising Party

   Silent auction enthusiasts were going through and bidding on over 20 packages.

Silent auction enthusiasts were going through and bidding on over 20 packages.

Amazing. High-energy. Lovefest. Incredible. We really don’t know how else to describe the very first major fundraising party NorCal SCI hosted but we’re probably understating the success of this event. The sold-out party was abuzz for over four hours as over 110 guests made up of families, friends and other supporters joined us to not only have a fun evening but to also blow us away with their show of financial support of the foundation.

As co-founders, it was truly a humbling and emotional event because we had a chance to meet with a large group in person and expose them to the work we’re doing while treating them to an amazing time, too.

Our dear friend, and Valley Medical Center Foundation CEO, Chris Wilder, was truly the glue that held the whole event together with a masterful job of emceeing the event, especially the critical parts involving the various auction items that were offered.

There were so many stirring moments, we don’t know where to begin. The speeches given by the members of the SCI community hit home with everyone in attendance and capsulized the realities we all face. We are grateful to Mia Gonzales, Casey Proud, Isabelle Javier and Arash Bayatmakou who spoke from the heart in their appeal to help support NorCal SCI.

   Krystina Jackson sings as her sister, Robyn, looks on.

Krystina Jackson sings as her sister, Robyn, looks on.

The dynamic sisters, Krystina and Robyn Jackson, brought down the house with their two-song performance. Krystina got things rolling with her rendition of Shirley Bassey’s ‘60s hit song, Big Spender, to try and communicate to the audience what they need to do come auction time. Next, her sister Robyn took over the show with Bruno Mars’ Uptown Funk that had everyone clapping and a few dancing. Between the two, the stage was set for Chris Wilder to perform his magic with the bidding, pledges and other donations that the crowd was into. Call us shameless but we even sold the flowers on each table.

All throughout the night, food and alcoholic beverages were quite literally flowing freely, so everyone had a good buzz going. Tons of introductions and conversations were taking place between the guests and members of the SCI community attending the event.

   Mia Gonzalez, one of several speakers of the evening

Mia Gonzalez, one of several speakers of the evening

We had to deal with a few first-event challenges but most of the crowd was unaware, so it didn’t affect the great time they had. The words we kept hearing over and over were “we can’t wait ‘til next year.”

We are still accounting for everything and will share the results of the evening with you in the coming weeks as we gladly want to share the financial contribution our supporters provided from the evening. We also hope to share additional pictures and a video of the event as soon as possible.

We’re already thinking about next year and a suitable venue to host an even larger group but for this year, we’re so grateful to every single person who came and made this event an incredible one.

Natural Supplements to Treat Common SCI Ailments

There’s a lot of disagreement on the role of non-medical approaches to dealing with the variety of spinal cord injury related medical conditions that some may end up suffering from. A common one we hear often for keeping urinary tract infections at bay is cranberry supplements. Our friend, Rich Johnson, swears by them and says it’s helped him keep his bladder happy. But what else is out there?

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The challenge for the scientific community remains one of not being able to confidently declare natural supplements as a potential cure or preventative measures against various ailments, so it was very interesting when we came across THIS ARTICLE that shared potential solutions for half a dozen of the top medical issues we tend to deal with. As always, don’t go straight to your vitamin store and load up on this stuff. Do you research first, consult your doctor and then make a decision.