Past results of Umbilical Cord Blood Stem Cell clinical trials provide lots of hope for upcoming U.S. trials

Some 50 participants attended Wise Young’s April 15th presentation in San Jose.

Some 50 participants attended Wise Young’s April 15th presentation in San Jose.

“Can I get your name?”  The young man whispered his name.  “And what city are your from?”  He responded “----dale.”  I didn’t quite hear him and asked him to say it again.  “Palmdale.”  For a second, I thought to myself, wow, I know where that is.  It’s north of Los Angeles, about 350 miles or so from San Jose, but why did this man drive 350 miles to come to Dr. Wise Young’s April 15th presentation?  The next person who checked in was from Las Vegas.  Wow, that’s over 500 miles this person has driven to be at this presentation.  And so, people from far distances in Fresno, Los Angeles, Sacramento and other cities had driven up to the Bascom Community Center in San Jose for Dr. Young’s only public appearance in California to discuss the upcoming clinical trials of umbilical cord blood stem cells for complete chronic injuries between C5 and T11.

NorCal SCI’s co-founder, Franklin Elieh, has been following Wise’s (he likes to be called Wise) work for over two decades but had never met him in person.  And so, when we had a chance to host him to speak to the SCI community, we jumped on it.  His upcoming clinical trials are the only ones targeting the chronic population.  Most other trials focus on the newly-injured and so, it is deserving of a lot of attention and interest.

Dr. Wise Young with NorCal SCI co-founders Nick (in the back) and Franklin (in the front)

Dr. Wise Young with NorCal SCI co-founders Nick (in the back) and Franklin (in the front)

I met with him privately to discuss his work.  For 15 years, he’s worked to set up a China Spinal Cord Injury network of 25 centers in China where there are more chronic spinal cord injuries there than anywhere else in the world with over a million such cases. He gained a great deal of insight and experience from the larger population of SCI.

While in the early 2000s, there was a lot of talk involving the use of embryonic stem cells. “At the same time, we were reading a lot of studies involving the use of umbilical cord blood stem cells in rats, cats and dogs with great results and so, we decided to go that route and refine the method to ultimately be able to test them on humans,” explained Wise.  After four years of work to purify the process, they began the early safety phase of the study.  The interesting part of their work involves injecting the stem cells into the surrounding area of injury, somewhat unconventional as most other trials insist on injecting stem cells directly into the area of injury. 

Umbilical cord blood is a baby’s blood in the placenta, the richest source of stem cells available.  When combined with carefully-balanced doses of oral lithium, they have found the axons get more excited, grow more and stay in the spinal cord longer.  In the 42 subjects involved in their China studies, there’s been no loss of function in any patient which was reassuring.  But probably the most critical part of their studies involved the intense therapy each subject was put through.  “We called it the 6-6-6 program … six hours a day, six days a week for six months,” described Wise.  Following the injection of millions of stem cells, the subjects began their training which involved standing initially with assistance, then without any assistance, walking in a rolling walker with minimal or no assistance, and then walking with a 4-point walker with minimal or no assistance.  They walked three hours in the morning, three hours in the afternoon.

While walking was the primary focus of the study, some other interesting benefits were observed, too. Some subjects regained bowel and bladder function and eliminated use of catheters or other devices/drugs for bowel management.  Additionally, ground-to-wheelchair transfers were also observed as well as being able to roll in bed independently.  Blood clots and pressure sores were also significantly reduced.  Many males reported improvement in sexual functions, both with erection and ejaculation.

“I realized, due to our work in China, how wrong most scientists are about spinal cord injury,” quipped Wise.  For example, it’s presumed those with heavily atrophied legs would not be able to walk.  “We found that to be otherwise,” said Wise.  Much is made of scar tissue acting as a barrier for regeneration of axons.  “We found that to be completely erroneous,” continued Wise.  “We also found use of braces or mechanical devices interfered or prevented walking, including harnesses that hold the person while attempting to walk.”

You can read his published paper from the China/Hong Kong clinical trials HERE.

Throughout his presentations, he suggested that many myths involving recovery from SCI can be proven untrue.  For example, following a complete diagnosis of SCI, hardly any attempt is made to get the person to walk because it is assumed it’s not an attainable goal and that the focus should be more on activities of daily living.  Wise disagreed with that approach. 

Wise is convinced that the combination of stem cells, lithium and 6-6-6 is key to best results and they will be testing 27 subjects for their upcoming clinical trials which would be divided into three groups with different combination of protocols to see which combination would work best.

After his presentation, many of the attendees hung around to ask him specific questions and he patiently spent time with every one of them.

TO APPLY FOR ENROLLMENT IN THIS CLINICAL TRIAL: The FDA has granted approval for this clinical trial which will begin with 27 subjects. In order to qualify for this trial, you must have a complete injury between C5 and T11, be injured more than 1 year, 18-64 years old. Neurosurgeons are reluctant to inject above C5 because of the phrenic nucleus which if damaged, it could result in diaphragm paralysis preventing the individual from being able to regulate breathing on his or her own. Dr Young plans to have a separate trial for high quads after this one. There is no cost to participate in this clinical trial, but if selected, you would have to cover the cost of lodging and transportation in NJ for 6 months. If you wish to be considered, send an e-mail to Jim Bennett at jimbenn@rutgers.edu

 

 

 

Registration for June 8 Day on the Lake event now open

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The second annual Day on the Lake at the Vasona Park & Lake in Los Gatos is coming up on Sat., June 8th and with it, the registration has also started for those individuals with a physical disability to enjoy a day full of accessible kayaking and outrigger canoeing. Last year saw over 100 individuals get into the water with many for the first time ever.

In addition to the water-based activities, families are also urged to come to this free event where there will be bounce house for the kids, face painting, craft tables, music, games and other free fun activities that have also been planned. And yes, there will be free food and beverages as well.

The event is put on by the Santa Clara Valley Medical Center’s Rehab Center as well as about a dozen partners including NorCal SCI. Many non-profit organizations will be present at the event that can answer questions regarding the programs and services they’re offering.

Space is limited and so, we urge you to REGISTER NOW. The event runs from 10 a.m. to 3 p.m.

Shelley Wood, dietitian with expertise in SCI, joins NorCal SCI's Advisory Board

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A lack of proper nutrition and diet for someone with a spinal cord injury has a debilitating effect on their quality of life and so, we’re grateful that one of the rarest dietitians with specific expertise and workings with SCI, Shelley Wood, has agreed to join NorCal SCI’s Advisory Board.

For several years now, we’ve known and observed Shelley’s incredible passion, knowledge and enthusiasm to work with the newly-injured patients at the SCI Rehab Center of Santa Clara Valley Medical Center. Coupled with the importance of proper nutrition to the SCI community, we knew that we had to ask her to join our team.

Shelley is a lifelong advocate of nutrition. When she isn’t working with her patients, she can be found in her greenhouse or kitchen. She obtained her B.S. in Nutritional Science from San Jose State University (SJSU) in 2012. She completed her dietetic internship at Santa Clara Valley Medical Center (VMC) in 2013 and was hired as a full-time clinician a month after its completion.  She continued her education while honing her clinical skills and obtained her Master’s in Public Health in 2016 from the University of New England. Soon after, she became a lecturer at SJSU and currently teaches Advanced Medical Nutrition Therapy.

Not long after she began her work at VMC, Shelley was assigned to the Rehab Respiratory and Acute Rehab Units. She enjoyed a steep learning curve in SCI rehab but has been able to employ her clinical knowledge as well as the knowledge she has obtained by working closely with the SCI population and the unit’s tight-knit team.

Shelley partnered with the Rehabilitation Research Team at VMC in 2018 and they were awarded a grant from the Christopher and Dana Reeve Foundation, with help from the VMC Foundation, to work with 15 participants in a tele-nutrition study using iPads and a photo journaling app. The aim of this Quality of Life study was to connect patients who discharge farther away to a dietitian for consistent, ongoing nutrition counseling and to bridge the gap between inpatient and life afterwards, thus establishing solid nutritional habits.

“The role nutrition plays is well established in the general, able-bodied population. Those with spinal cord injuries are living longer due to advances in medical practice and cutting edge therapy. This population is now at risk for the same chronic diseases that poor nutritional habits lead to in the able-bodied population. Unfortunately, for those with SCI, it is much worse. Without establishing healthy nutritional habits early on, this population is at risk for rapid weight gain (or loss), pressure ulcers, diabetes, and chronic heart disease, among other risks,“ said Shelley.

We’re honored and grateful to have Shelley aboard and join an incredible team of Advisory Board members we have assembled.

Nick & Franklin, co-founders
NorCal SCI

VMC Foundation underwrites SCVMC's Care Package program with $16,600 grant

Valley Medical Center Foundation (VMCF) announced the awarding of a $16,600 grant to support Santa Clara Valley Medical Center’s expanded Care Package program provided to every new patient at the hospital’s spinal cord injury rehab center. The grant allows for an upgraded backpack holding the many educational documents, tools and devices selected based on each patient’s unique abilities and needs, home devices such as Google Home Mini or Amazon’s Echo Dot, enhanced drinking cups and more.

This effort was led by NorCal SCI’s co-founder, Nick Struthers, who collaborated with the leadership and staff at the hospital as well as VMCF’s CEO, Chris Wilder, and Senior Development Officer, Debbie Burdsall, who believed this was a program worth investing in so that all newly-injured SCI patients have access to great information and tools as they begin their new journey.

As the recipient of the grant, NorCal SCI will collaborate with the staff at the rehab center to manage purchase and distribution of all the contents of each Care Package.

Separately from this program, NorCal SCI can provide its own Care Package with the similar type of content to any newly or recently injured person in Northern California as well as working with any rehab center interested in partnering with us to help develop their own Care Package program. Contact us at info@norcalsci.org for more details.

Registration for BORP's May 19 SportsFest is now open

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Bay Area Outreach & Recreation Program (BORP) is now accepting registrations for its SportsFest taking place on Sun., May 19 from 9 a.m. to 5 p.m. SportsFest provides the opportunity for participants to try out some of BORP’s adaptive sports and recreation activities, featuring cycling, kayaking, an outdoor seated Tai Chi class, and climbing. There’ll be plenty of information about BORP’s other programs and a free lunch will be served.

Funded by the Neilsen Foundation, the 2019 SportsFest is aimed at youth (ages 10 and above) and adults with a spinal cord injury. Priority registration is available to individuals with an SCI through May 4th and can be done HERE. After that, registration will be open to everyone.

BORP will offer a free shuttle from the Ed Roberts Campus (at the Ashby BART station) to the bike house but you must pre-register with cynthia@borp.org. The shuttle will operate 10 a.m.-3 p.m. and run every hour on the hour.

As always, volunteers are needed to help throughout the day. Volunteers can sign up any time. There is plenty of opportunity for people to both volunteer and participate in activities.

CIRM to host April 25 Facebook Live broadcast on stem cell clinical trials

One of the questions we see countless times involves how a clinical trial can be found for a particular disease or disorder. It’s a hugely important question and one that doesn’t always have a simple answer. It gets even more confusing when you go online and find lots and lots of “clinics” offering therapies they claim will work wonders for you and all you have to do is give them a few thousand dollars.

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So how do you know what’s real and what’s not, what works and what doesn’t? Well, the folks at the California Institute for Regenerative Medicine (CIRM) will be hosting a special Facebook Live: “Ask the Stem Cell Team About Clinical Trials” event on Thurs., April 25th from noon to 1 p.m.

A panel of experts will lead the discussion who can answer all your questions about stem cell therapies, the good, the bad and the downright ugly. What are the red flags to warn you about a particular trial? Where is the best place to find out what’s available? How much will it cost me? You can get the answers to these and other questions during this session.

Here’s where you can find out a little bit more about the event.

It will be an eye opening, informative and engaging hour and you can either join on the day and post questions for the panel to answer, or you can email them directly to CIRM beforehand at info@cirm.ca.gov.

High Fives Foundation to host first-ever Meet Up on April 29 in San Francisco

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Truckee-based High Fives Foundation will be hosting a Community Meet Up in San Francisco on Mon., April 29th in an effort to help, in their words, connect and empower as many people as possible and provide more opportunities for people to come together, build relationships and share experiences.

Founded 10 years ago by Roy Tuscany, who suffered a spinal cord injury 13 years ago while skiing, the organization’s core mission is to support the dreams of outdoor action sports athletes by raising injury prevention awareness while providing resources and inspiration to those who suffer life-altering injuries. It has raised and awarded millions of dollars in support of its mission.

The goal of this Meet Up is to connect like-minded individuals and build a community of support, fun and inclusivity. High Fives Community Meet Ups are inclusive to family, friends, leaders of communities, therapists, care givers, and any and every individual who has experienced or been involved with a life-altering injury and wants to get back to the outdoors and an active, goal-driven lifestyle.

The idea is to provide a space for members of the High Fives community to connect. These Meet Ups can range in both size and activity – from large happy hour events to group activities such as organized bike rides to coordinated community service efforts.

The Meet Up in San Francisco runs from 5:30 p.m. to 8:30 p.m. and is held at the Standard Deviant Brewery, 280 14th St. To attend, you must register HERE.

United Spinal Association: Free membership has its benefits for the SCI community

When we decided to become the Silicon Valley Chapter of the United Spinal Association in August of 2017, we did so because of their dedication to enhancing the lives of people with spinal cord injury and disease. They have been advocating for the rights of wheelchair users for 73 years and provide support, resources and assistance through national programs and services.  

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One of the great and free benefits they offer is their membership. Among the many benefits are advice and guidance, advocacy and public policy, veterans benefits counseling, peer support, free subscription to New Mobility magazine, informative and educational publications, ongoing educational webinars and a network of 54 chapters across the country. Everything they do revolves around making sure all members’ voices are heard.

And so, it is with great confidence that we urge you to sign up and become a member HERE and help support the great work they do. Your free membership sends a strong message in support of the United Spinal’s advocacy for policies that affect you and your family.

SCI Active Network's 2nd Annual High Roller Poker Tournament Fundraiser coming April 27

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Our good friend and founder of SCI Active Network, Troy Plunkett, is inviting everyone to come and support the 2nd Annual High Roller Poker Tournament Fundraiser on Sat., April 27th in Vallejo. The evening will feature a Texas Hold’Em Tournament, dinner and prizes. But you don’t have to be a poker player to have a great time and help support a great organization serving the spinal cord injury community through its various programs such services.

The dinner-only option is $20 and to get into the tournament, the ticket is $60. To purchase your tickets, click HERE. The event runs from 5:30-11:30 p.m. at the USA World Classics Event Center, 1525 Sonoma Blvd., Vallejo.

Lights! Camera! Access! Career Exploration Summit comes to Mountain View on May 17

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The Mountain View Chamber of Commerce, Disability Media Technology Alliance and Lights! Camera! Access! 2.0 are producing a multi-faceted Global Accessibility Symposium and Showcase on Fri., May 17th at the Computer History Museum in Mountain View. The event is in coordination with week-long showcase opportunities to universally design technology with everyone’s needs in mind and to attract, retain and promote talent, and cultivate leadership, so organizations can accelerate market transformation.

Among the many programs being offered, the event will include a "How to Make it in the Media" Panel, Speed Interviews, Resume Reviews, Flash Mentoring and Workshops. If you are interested in applying, please complete their online application by April 30th at 8 p.m.