SCI cure is in the eye of the beholder

SCI cure.  Just what exactly is it and what does it mean?  We've all seen the avalanche of potential research and clinical trials involving stem cell therapy.  It's easy to get excited about it.  Why not?

Kate Willette

Kate Willette

There are an estimated 13,000-14,000 individuals living in Northern California with some form of paralysis as a result of a spinal cord injury.  Another 600 or so join the ranks every year as a result of new injuries.

As NorCal SCI has reported in the past, the California Institute for Regenerative Medicine (CIRM) has been the biggest state agency in the U.S. involved in funding research using stem cells to develop potential cures for many diseases and disorders, including spinal cord injury.  Their success has been very limited at best, having devoted some $60 million in funding to various SCI research studies and trials with the only active clinical trial currently led by Asterias Biotherapeutics.  

They (CIRM and Asterias) have loudly touted the advances of that study which is great since anytime research is being done, we learn some new keys to unlocking the mystery of SCI.  Our friends at New Mobility magazine recently featured a column by Kate Willette.  Her most recent book, Don’t Call It a Miracle, was commissioned by the Christopher and Dana Reeve Foundation and you can get a free copy HERE. Since her husband’s C-6 injury in 2001, she has become a lively voice informing a worldwide community of people living with paralysis about the state of SCI research.  Read Kate's informative column HERE.

NorCal SCI presents at the Sutter Rehab Centers in San Francisco and Oakland

As part of our continued outreach to the Northern California Rehab Centers, NorCal SCI co-founder Nick Struthers visited the California Pacific Regional Rehabilitation Center (CPMC) at the Davies Campus in San Francisco last Thursday. He then rushed over the Bay Bridge to present to the SCI Team at the Alta Bates Summit Medical Center Acute Rehabilitation Center in Oakland.

Todd Boyer (left) and Nick Struthers at CPMC North Tower

Todd Boyer (left) and Nick Struthers at CPMC North Tower

I had arranged to meet up with Todd Boyer at the Davies Campus just before our meeting with the CPMC Team, writes Nick.  I first met Todd in August of 2017 when I visited the Sutter Rehabilitation Institute (SRI) in Roseville. Todd, who is a volunteer, coordinates the peer support group there and has been doing great work in the SCI community for many years now.

We made our way to the Activity Room on the first floor which has spectacular views of the evolving city skyline and on to the Bay. We were greeted by Michelle Nicolas, an occupational therapist who was hosting us that day and she helped me set up for my presentation.

CPMC North Tower

CPMC North Tower

The medical team has regular in-service meetings where it gives a chance for the medical rehab staff to learn about services and organizations they may benefit from knowing. I had the opportunity to update the staff on NorCal SCI's plans for 2018 as well as give a clear picture of the Northern California Rehab and volunteer organizations. Todd was able to communicate the approach SRI was taking regarding peer support for the SCI patients and community in Roseville. Before I rushed off to Oakland, I was able to deliver our latest Care Package to one of the patients and say hi to Mira El-Katcha, the occupational therapist who was instrumental in setting up my visit.

Mary Cafarella-Ake, the Director of Rehabilitation Services at the Alta Bates Summit Medical Center, had invited me to present to the multi-disciplined SCI Rehab team at their regular team meeting. The Summit Center is the third largest SCI Acute Rehab Facility in Northern California in terms of number of patients treated and like its San Francisco counterpart, many of the spacious single rooms have spectacular views of the Bay Bridge and the city skyline. I saw a few familiar faces in the meeting as I had been given the opportunity to meet with some of the team a year previously.

Alta Bates Summit Medical Center

Alta Bates Summit Medical Center

I was able to introduce NorCal SCI to the staff as the majority were not aware of our work. I was also able to present my own views on Peer Support Programs and how such a program could be implemented. I then left another four NorCal SCI Care Packages for the patients.

I want to thank the staff at Sutter for taking the time out of their busy schedules to learn more about our work at NorCal SCI. In particular, I would like to personally thank Mira El-Katcha for organizing my visit to CPMC and Mary Cafarella-Ake for being such an accommodating host at Alta Bates.

NorCal SCI is excited about working with both CPMC and Alta Bates to best serve their SCI patients in any way we can.

Update on condition of Pleasant Hill high school wrestler Ryan Joseph

Left to right:  Jim Keck, College Park High School Athletic Director, Ryan and his mother

Left to right:  Jim Keck, College Park High School Athletic Director, Ryan and his mother

We wrote a month ago about the tragic accident involving Pleasant Hill resident, Ryan Joseph, who suffered a C-4 spinal cord injury during a wrestling match at his high school.  He was transferred to Craig Hospital, the nationally renowned SCI rehab facility in Denver some three weeks ago and there's an update on his status.

When Ryan was transported to Craig, he was breathing with assistance from a ventilator but he has now gone almost a week breathing on his own, a significant improvement.  This enabled him to have his first solid meal in a month, a combination of a Reuben sandwich, fries and root beer.  

Ryan still has quite a few weeks left at Craig and NorCal SCI will update his progress as much as possible.  His GoFundMe page has generated nearly $190,000 in contributions with a goal of $500,000.  

Diet & nutrition study seeks SCI volunteers interested in improving health

 

The purpose of this study is to determine if a low carb or low fat diet helps adults with a spinal cord injury stick to their diet, improve body composition, and lower the risk of diabetes, heart disease or stroke. 

This study, 24 Start, seeks to get you started on the path to improving your health and is for adults with SCI between the ages of 21 and 60 who are interested in trying a new diet.  Participants must have a Body Mass Index of 22-55 kg/m2, and have Internet access as well as a smart phone.  Working with a Telehealth coach, you would devise a personalized diet plan and for your troubles, earn up to $100.

If you're interested, please contact Alex Yates at gro.erohsekal@yxela or (205) 403-5525.  

Aftermath of passage of HR 620: what happened and what's next

The U.S. House of Representatives voted 225-192 last Thursday to approve H.R 620, otherwise grossly known as the ADA Education and Reform Act of 2017, that sets up a significant gutting of the ADA laws.  A troubling outcome involved the number of Democratic members who ended up supporting this bill, including six from California.

Here are the six members of the California delegation who voted to support HR 620 which you can remember in November of this year when they seek re-elections:

Pete Aguilar, San Bernardino County
Phone:  (909) 890-4445

Ami Bera, Sacramento County
Phone:  (916) 635-0505

Lou Correa, Santa Ana
Phone:  (714) 559-6190

Scott Peters, San Diego
Phone:  858-455-5550

Jackie Speier, San Mateo
Phone:  (650) 342-0300

Norma Torres, Ontario
Phone:  (909) 481-6474

Of course, as expected, all 14 Republican members voted to support the legislation, too.

OK, so we lost this battle but the war is not over and the final battle looms in the U.S. Senate which will be yet another major challenge, given the Republicans hold the majority 51-49, unless a couple of them flip over while Democrats vote together.  So, assume nothing and contact your Senators:

Diane Feinstein
https://www.feinstein.senate.gov/public/index.cfm/washington-dc

Kamala Harris
https://www.harris.senate.gov/contact

No Limits Collaborative announces new season of mixed abilities triathlons

NorCal SCI's friends at No Limits Collaborative just announced their 2018 Mixed Abilities Triathlon season featuring four events this summer in Auburn, Pleasanton, Oakland and Berkeley and this year, NLC has been designated the official beneficiary by the organizers of the triathlons, USA Productions.

nlc.png

This is the fourth year NLC is participating in these events and athletes with a spinal cord injury or other neurological condition can participate in swim, cycle or run/push segments of the triathlon.   You can create your own team or email NLC to put you on a team based on what section of the triathlon you would like to compete in.  

NLC is also partnering with the Bay Area Outreach and Recreation Program (BORP) adaptive cycling center to teach and train individuals to ride an adaptive hand or foot bike. They can help you get fitted and get riding as soon as possible and will even take care of transporting these bikes to and from the race.

Additionally, they will host swim clinics and wheelchair push clinics to provide coaching and guidance to perfect your technique and possibly inspire you to try a new leg of the next race.  

To learn more about the four events and how to sign up, CLICK HERE.

Meal planning/cooking design study seeks volunteers with SCI

A design project study at the California College of the Arts is conducting research on how people with spinal cord injuries navigate meal planning and cooking at home and they are in need of volunteers with SCI in order to learn about their needs, challenges, and solutions around cooking.

The project team's objective is to create a product or service that makes cooking at home more accessible and enjoyable for people with physical disabilities. The initial study involves a 30-minute phone call to learn how you go about planning, buying, cooking, eating, and cleaning to learn where in that process the biggest pain points lie, what solutions or workarounds people already use, and thus where there might be opportunities for a new product or service that could support them.

The project is in a research mode now and once it's concluded, the goal is to create some initial concepts followed by testing of prototypes by the end of March.  To participate in this study, please contact Dane Wetschler at dane@cca.edu.

NorCal SCI kicks into high gear by launching major fundraising effort

When we announced our 2018 Goals & Objectives some five weeks ago, we were fully aware of some challenging tasks that we'd be taking on, challenging due to the manpower AND financial resources they will require in order to be achieved.  But we remain unfazed and it is with that mentality that we're announcing the launch of NorCal SCI's major fundraising drive.

Fundraising can be complex and because of the hundreds of members of the SCI community that we have met over the years and knowing the challenges that many of them face, the funds we raise will help a lot of people. More importantly, it will demonstrate that with more funding, more services and more resources can be offered to help this community solve many of their challenges.

NorCal Spinal Cord Injury Foundation (NorCal SCI) is a non-profit corporation and tax-deductible donations are accepted under under section 501(c)(3) of the US Internal Revenue Code.
EIN:  82-2423561

Here are a few ways you can make a contribution
1.  By credit card:  Use our secured online donation page.

2.  By check (this is our preferred method as there are no Credit Card Processing Fees) 
Please make your check payable to "NorCal SCI." Send it to:
NorCal SCI
696 N. Santa Cruz Ave.
Los Gatos, CA  95030

3.  Employer Matches - Many companies offer matching of charitable contributions by their employees.  Your money can go much farther when you take advantage of this program as typically, employers match dollar-for-dollar your contribution.  The $500 you contribute means $1,000 to NorCal SCI.  Please contact your company's HR/Benefits department and ask them if they offer this program.  If so, please designate your contribution to Valley Medical Center Foundation (they are our sponsors for this employer match program) but make sure you identify NorCal SCI as the beneficiary so VMCF will direct the funds to us. 
If you use this method, please also email us at info@norcalsci.org so that we can ensure the correct processing of your donation.

Some employers may require the following information in order to match employee contributions:

Organization Name:    NorCal Spinal Cord Injury Foundation
EIN:    82-2423561
Address:    696 N. Santa Cruz Ave, Los Gatos CA95030
Phone:    408 458 9863
Email:    info@norcalsci.org
Web Site Address:    http://www.norcalsci.org

4. Become an Angel Investor
Any family or individual who contributes $1,000 or more will be listed on our Angel Investors Board.  Founded in May 2017 and incorporated in September 2017, we are in every sense a Startup and we rely heavily on our Angel Investors to fund our venture. Who else can offer an ROI of knowing that our Angels are making a real difference in the Northern California Spinal Cord Injury Community?

Our final word:  please take the time to think about the maximum amount you can donate.  Think about the people you know who you can share this with and recruit them to join this cause and help us meet our financial goals.  If you have any doubts, take a look at what we accomplished in eight short months in 2017 since we launched our organization.  With appropriate funding, our 2018 goals can be accomplished.  

Thank you for your encouragement and support.

Nick, Franklin, Carl
NorCal SCI

Sonoma-Marin support group meeting coming up on Feb. 19

The Sonoma-Marin Spinal Cord Injury Support Group will be meeting on Monday, Feb. 19th from 4-5:30 p.m. and will brainstorm a number of topics to address for the upcoming meetings in addition to an opportunity to socialize.

This will be a good meeting to attend to help shape the future topics discussed at these meetings.  A few topics that have already been developed will be shared with the group for feedback.

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 stankosloski@gmail.com.

 

NorCal SCI co-founders complete highly-productive schedule of meetings in Berkeley

What an amazing experience Nick and Franklin, NorCal SCI co-founders, enjoyed during their all-day trip to Berkeley last Thursday to meet with various organizations serving the disabled community. 

Nikki from Easy Does It along with Franklin

Nikki from Easy Does It along with Franklin

A word of caution to anyone who has never been to Berkeley:  watch out for the pedestrians who have a tendency to dart on to the streets using (correctly) the pedestrian crossings but without any pause in their crossing attempt to make sure the incoming traffic has seen them and will stop.  Boy, twice, we came close to hitting someone. 

Our first meeting was with Nikki Brown-Booker, the Executive Director of Berkeley’s Easy Does It Emergency Services.  They offer emergency attendant services, transportation, wheelchair repair and loaner among other services.  Through their 24/7 dispatch service, they’re able to provide round-the-clock services critical to the disabled community of Berkeley at amazingly low rates.  For example, their attendants charge $15 per hour and they strive to have a male and female attendant available at all times.  We came away so impressed by the structure and level of service provided by Easy Does It.  But it is important to recognize that they offer “emergency” service, not ongoing support.  We learned a lot from our meeting with Nikki as we look to find ways to address some of the challenges faced by the spinal cord injury community in other parts of Northern California using innovative projects such as Easy Does It.

Left to right:  Nick, Rick Smith and Franklin

Left to right:  Nick, Rick Smith and Franklin

Our next stop was with Rick Smith, Executive Director of Bay Area Outreach & Recreation Program (BORP).  It is the leading provider and promoter of accessible sports and recreation opportunities for children and adults with physical disabilities in the greater San Francisco Bay Area.  You need to check out their calendar to see the wide array of programs they offer.  Rick shared their goal is to expand the reach of BORP to more communities in the Bay Area and we shared with him some ideas on how to accomplish that.  They’re currently collaborating with Berkeley Ironworks by offering an indoor adaptive rock climbing program which they hope to expand more frequently.  We discussed with Rick the lack of services offered by BORP in the areas of Northern California outside of the Bay Area and he also shared his goal of increasing BORP’s presence and services to a larger audience.  We see there are ways for our two organizations to collaborate further to better serve our communities.

From left to right:  Nick, Sid Wolinsky and Franklin

From left to right:  Nick, Sid Wolinsky and Franklin

We next met with Sid Wolinsky, managing director of the non-profit Disability Rights Advocates, one of the leading non-profit disability rights legal centers in the nation.  We met Sid at the Ed Roberts Day awards gala last month in Berkeley and he invited us to stop by their office to explore areas of common interest.  DRA has represented the disabled community in many landmark cases and is about to celebrate its 25th anniversary.  Locally, they have filed several lawsuits against Bay Area Rapid Transit (BART) for many access-related issues and have won every one of them.  We shared with Sid and his team of attorneys the various issues that are challenging the SCI community in Northern California and hope to continue the dialogue in the coming months in areas that can be further advanced.

At the Berkeley Spinal Network, Elizabeth socializes with Nils.

At the Berkeley Spinal Network, Elizabeth socializes with Nils.

We headed back to the Ed Roberts Campus to meet with Erin Hallett, one of the co-founders of No Limits Collaborative.  They are a group of young and highly-educated and trained physical therapists with a special focus and passion to work with individuals with spinal cord injury.  We got an update from Erin on the group’s current plans and shared with her what NorCal SCI is working to accomplish in 2018 and explored areas where we can collaborate with them.

Finally, our last gig was with the Berkeley Spinal Network and presenting NorCal SCI at their monthly meeting.  We enjoyed seeing a lot of familiar faces as well as meeting a number of new ones as we shared with the group what we’re hoping to accomplish and got some good feedback.  We’ve always felt we make the most impact when we’re face to face with members of our community and this setting was exactly what we were looking for.  We appreciate the group for hosting us and hope to see them more frequently.

Nick and Peter at the Berkeley Spinal Network meeting

Nick and Peter at the Berkeley Spinal Network meeting

As we headed back home, we couldn’t help but feel giddy about the wealth of information we gained and exchanged with the various groups and re-affirm in our minds that there are a lot of pressing issues and challenges facing the SCI community that justify the existence of NorCal SCI and we will work to engage with and collaborate with any individual or organization who wants to be part of the solutions out there.