The ICORDian Fall 2024


In this issue, alarming statistics about mountain-biking and SCI, three stories that have a connection to bladder and bowel dysfunction after SCI, and three interesting students, and more! Plus our regular features: what’s new at ICORD-O and Partner News! Special thanks to ICORD Work Learn student Jocelyn Chan, who wrote most of the articles in this issue while navigating her first semester of UBC medical school!

We hope you enjoy these feature stories:

And these regular columns:

SCI from MTB: Dr. Kwon’s research raises alarm

Originally published by UBC Public Affairs

ICORD Director Dr. Brian Kwon, along with his colleagues at UBC and Praxis Spinal Cord Institute, has published a new study in Neurotrauma Reports highlighting a growing concern: spinal cord injuries (SCI) resulting from mountain biking accidents. Titled “Spinal Cord Injuries Secondary to Mountain Biking Accidents — A Cause for National Alarm,” the study analyzes data from the Rick Hansen Spinal Cord Injury Registry and reveals the startling frequency and severity of these injuries in British Columbia.

Between 2008 and 2022, 58 individuals in B.C. sustained spinal cord injuries while mountain biking—a number far exceeding those from other high-risk sports like ice hockey, skiing, and snowboarding. Many of the injuries occurred at lift-equipped bike parks, with 36% originating from Whistler Mountain Bike Park alone. The majority of those injured were healthy young men. 77.5% of accidents resulted from being propelled over handlebars.

“These are devastating injuries,” said Dr. Kwon. “With mountain biking growing in popularity, we hope these findings will prompt more awareness and initiate a discussion around how to keep people safe.”

The paper estimates the collective cost of these injuries to B.C. at $195.4 million, including healthcare, rehabilitation, and economic impacts such as loss of productivity. Dr. Kwon emphasizes the need for collaboration between health professionals, mountain resorts, and the biking community to address prevention strategies.     To learn more about the study, read this story on our website, or access the full publication here.

Examining bowel & bladder dysfunction across borders

By Jocelyn Chan

The findings of a Krassioukv Lab study comparing bowel and bladder dysfunction following SCI in Canada and India were recently published.

First author Dr. Aliza Hirsch, currently a resident physician, completed her undergraduate studies at McGill University and her medical degree at UBC, where she joined Dr. Krassioukov’s lab and got involved in the collaborative project aimed at understanding the experiences of individuals living with SCI in the two countries.

SCI often disrupts the communication pathways between the brain and organs that control bowel and bladder functions, leading to what’s known as neurogenic bowel and bladder dysfunction. Dr. Hirsch and her colleagues at ICORD, Praxis Spinal Cord Institute, and several rehabilitation facilities in India, used validated scoring tools – the Neurogenic Bowel Dysfunction Score and Neurogenic Bladder Symptom Score – to evaluate the severity of these issues among participants from both countries. “Bowel and bladder problems are consistently listed as top priorities for recovery by people with SCI,” she said, emphasizing the substantial impact these issues have on quality of life.

The study revealed intriguing differences: Canadian participants reported higher levels of bowel dysfunction, often experiencing constipation. One possible explanation for this raised by the authors includes dietary differences between the two countries. While Canadian diets can sometimes lack fiber, traditional Indian diets tend to be richer in fiber, potentially aiding bowel function. Other factors, such as activity levels, caregiver support, and educational resources, may also play roles in these differences.

In terms of bladder health, overall dysfunction scores were similar between the two groups. However, when participants were asked, “If you had to live the rest of your life with the way your bladder currently works, how would you feel?” Indian participants expressed lower satisfaction compared to their Canadian counterparts. Dr. Hirsch believes that this discrepancy may relate to the different bladder management techniques commonly used in each country, as well as cultural and social factors that shape expectations and self-image.

For Dr. Hirsch, this study shows the importance of understanding how culture, geography, and socioeconomic factors shape the lived experiences of SCI patients. “Part of providing patient-centered care is situating each patient within their unique environment, so we can offer them the most relevant and effective therapeutic interventions,” she explained. This cross-cultural insight is important for clinicians working with SCI populations, as it highlights the need for tailored care approaches that consider each patient’s background.

Read the full publication here.

Methods for assessing pudendal nerve function in pelvic health research

By Jocelyn Chan

Alison (Ali) Williams, alongside researchers in ICORD’s Lam and Kramer labs, recently published a systematic review on how different research groups are conducting pudendal somatosensory evoked potentials (SEPs) assessments. SEP assessments help clinicians and researchers evaluate how well sensory nerves communicate with the brain. For pelvic health, pudendal SEPs can provide insights into the function of the pudendal nerve, which carries sensory signals from areas like the bladder, bowels, and genitals.

What are pudendal SEPs? Pudendal SEPs involve applying a non-painful electrical stimulus to the pudendal nerve and then recording brain activity using EEG (electroencephalography). This allows researchers to determine if the nerve’s signals are reaching the brain correctly. Pudendal SEPs are particularly useful after a spinal cord injury, where communication pathways can be disrupted, despite the pudendal nerve itself remaining intact.

In this review, 132 studies were analyzed, finding a wide variation in how pudendal SEPs are measured. Surprisingly, 77% of studies lacked enough detail to replicate their protocols, limiting both the opportunity to synthesize protocol information and overall progress in the field. Most studies focused on the part of the pudendal nerve responsible for genital sensation, with fewer studies examining its role in bladder and bowel control. “Pudendal SEPs are such an important clinical tool and can reveal a lot about the nervous system. It’s crucial that we develop rigorous protocols for collecting pudendal SEPs accurately in both males and females,” said Ali.     The team also identified a substantial gap in female-focused research: nearly 80% of participants across studies were male, as males experience SCI at a higher rate than females. Much of the research has centered on male sexual dysfunction, even though sexual dysfunction and conditions like urinary incontinence and chronic pelvic pain may actually be more prevalent among females. This highlights a need for more inclusive research that investigates pelvic neurophysiology in females.

Supported by a Rick Hansen Foundation funded ICORD Seed Grant, ICORD researchers plan to build on these findings by implementing and testing the various methods identified in the review to establish optimal approaches. “We’re excited to bring what we’ve learned from this review into the lab!” said Ali.

Read the full publication here.

ICORD’s 2023-24 Annual Report is now available!

ICORD’s Annual Report for 2023-24, featuring highlights of ICORD’s programs, research, people and partners, has been published. Click here to download a copy.

Take Our Kids to Work Day: Sabba’s visit to ICORD

by Jocelyn Chan

On November 6, ICORD welcomed a special visitor for Take Our Kids to Work Day: grade 9 student Sabba! Sabba spent the day in Dr. Corree Laule’s lab with her mother, Farah, a histopathology technician for Dr. Laule and Dr. Brian Kwon. She had fun exploring the Laule lab, learning about histology and even got hands-on experience with staining spinal cord tissue.

Sabba described the lab as modern and colorful, filled with beakers, microscopes, and specialized machines for brain and spinal cord injury research. “I loved seeing how the brain and spine work and using different machines to understand them. The workplace design also made it feel welcoming,” she shared.

One highlight of Sabba’s day was completing the staining process for spinal cord tissue under her mother’s guidance. “I got pretty excited learning each step and seeing the colorful cells under the microscope,” she said. While the detailed nature of the work, like watching her mom spend hours on a single project, showed her the dedication required, Sabba appreciated the importance of the research. “My mom loves her job because it helps with discovery and treatment, which makes the world a better place.”

Sabba also found some unexpected aspects of the workplace intriguing. “To get through most of the doors, you need to scan a keycard. I thought that was very cool and a surprisingly good security system,” she added.

The visit not only gave Sabba a glimpse into her mother’s work but also sparked her interest in neurology and spinal cord research. For school, Sabba wrote a report on her day, which you can read here. We were thrilled to have had Sabba join us for the day and can’t wait to see where her curiosity and enthusiasm take her!

PhD student honoured for research project

By Jocelyn Chan

ICORD PhD candidate Analisa Jia received the 2024 Ernest Bors Award for Scientific Development by the Journal of Spinal Cord Medicine at the recent Academy of Spinal Cord Injury Professionals (ASCIP) Meeting. This award, named for Dr. Ernest Bors, a pioneering advocate for spinal cord injury research, is given to emerging researchers whose work contributes significantly to improving outcomes for individuals with SCI. Analisa is a member of Dr. Jacquelyn Cragg’s lab.

Analisa’s award-winning research, “Sex differences in heart disease prevalence among individuals with spinal cord injury: A population-based study,” focuses on cardiovascular health risks in people with SCI. Her study revealed that while heart disease prevalence is higher among men in both the SCI and able-bodied populations, this disparity is amplified in those with SCI. “We found that the effect of sex more than doubled in individuals with spinal cord injury,” said Analisa. These findings highlight the importance of further research on the intersection of sex, cardiovascular health, and SCI, with the potential to shape clinical and policy changes.     Reflecting on the award, Analisa said, “being recognized by the Journal and the Academy highlights the value of utilizing large datasets to foster research that can influence health policy and improve outcomes. I’m truly honored to accept the Bors Award.”

Analisa was invited to present her findings at the ASCIP annual conference in Chicago, Illinois, this past September. Read the editorial on Analisa’s award here.

Dr. Lyndia Wu awarded Canada Research Chair in Wearable Brain Injury Sensing

ICORD PI and UBC Assistant Professor of Mechanical Engineering, Dr. Lyndia Wu, is the new Canada Research Chair in Wearable Brain Injury Sensing. Dr. Wu’s research seeks to create a better understanding of how head impacts affect brain health by developing wearable sensors that can collect real-time data. At the Sensing in Biomechanical Processes Lab (SimPL), she and her team address the complex problem of monitoring head impacts by developing sensors that be incorporated into mouth guards or helmets during live sports play to collect data on acceleration, angle of impact, and effects on brain activity. Her team also works to develop mobile brain and body imaging systems, and wearables sensors for sleep.

Courtesy of UBC Mechanical Engineering

 

 

Exploring neural pathways and rehabilitation with Xueqing Zhou

by Jocelyn Chan

Xueqing Zhou is a PhD student in Dr. Tania Lam’s lab, researching the neural control and rehabilitation strategies of the pelvic floor muscles post-spinal cord injury. Recently, she was awarded the Cordula and Gunter Paetzold Fellowship, a two-year Affiliated Fellowship from UBC, to fund her research on bladder control mechanisms.

Originally from China, Xueqing moved to Vancouver in 2017, starting her post-secondary
education at UBC that has spanned her undergraduate, Master’s, and now PhD. “I had my very first taste of research and formal exposure to ICORD as an undergrad Directed Studies student with Dr. Tania Lam, and have been around ever since!” she said.

Her research focuses on the pelvic floor muscles, a lesser-discussed yet essential group involved in bladder control. By examining how changes in breathing and posture might affect these muscles, she hopes to identify new pathways for managing SCI-related bladder issues. “Bladder problems affect over 80% of people living with SCI, yet many current management options don’t work well enough,” Xueqing explained. Through this research, she aims to uncover alternative strategies, such as targeted exercises, that may improve bladder function.

During her Master’s studies, Xueqing found that individuals with complete SCI could activate their pelvic floor muscles during exoskeleton-assisted walking. “This finding suggests that these muscles might contribute to the improvements in bladder control seen after gait training in SCI patients,” she said. This observation led her to further explore how sensory inputs from the legs and feet might interact with the pelvic floor, influencing both posture and bladder function.

Outside of research, Xueqing enjoys creating artwork, dancing and playing badminton. She’s also an active cyclist and completed the Whistler Gran Fondo this past September.

At the end of this month, Xueqing will undertake her comprehensive exam, a significant milestone toward becoming a PhD candidate. While her current focus is on her PhD research, she’s excited about blending her passions for research and science communication in the future. “One thing I know for sure is that I enjoy research, especially problem-solving and constantly learning something new. I also deeply enjoy creating biomedical visualizations and communication projects as a way to share knowledge. So, wherever life takes me, I’ll try to keep those two elements around!”

Save the date: ICORD’s celebration of Women and Girls in Science is coming up

Monday, February 11, 2025
3:30-5:30 in the atrium of the Blusson Spinal Cord Centre

Current and future scientists of all ages and genders (and their parents / caregivers) are invited to celebrate women and girls in science, enjoy light refreshments, meet scientists and engineers, and have fun with science, technology, engineering, and math-related demonstrations and displays!

Special guests include Science World, Ethòs Lab, and Geering Up! Engineering Outreach

Free! Everyone welcome! Register here.

Aging with a SCI: a new video series

SCIRE (Spinal Cord Injury Research Evidence) and SCI-BC (Spinal Cord Injury BC) are excited to announce the release of a new video series, Aging with a SCI. Developed with the support of former GF Strong clients and current and past collaborators, including Bonnie Nybo, RN, and Andrea Townson, MD, these videos offer accessible, evidence-based information for individuals with SCI as they navigate the changes that come with aging.
The four-part series covers essential topics:

  • Taking Care of Your Bladder
  • Changes in Bowel Management
  • Managing Pain
  • Staying Active

Each video provides practical advice and strategies for managing these common health topics, supporting individuals with SCI in maintaining a higher quality of life as they age. SCIRE and SCI-BC invite you to watch and share these valuable resources widely within the SCI community.

Watch the Aging with a SCI series.

Research partnership explored in Kelowna

By Nancy Thorogood, Heather Gainforth, and Alanna Schwed

Seventy people, including ICORD trainees, staff and PIs, members of SCI community organizations, people living with SCI, caregivers, and healthcare providers, got together in Kelowna recently to discus ways to better include people with lived experience in ICORD research.

Two trainees wrote a grant . . .

The idea to bring ICORD researchers based in Vancouver to Kelowna to meet with researchers based at UBC-O was not new, however, it took two trainees writing a successful SSHRC Connections grant to make it happen. Sarah Lawrason, a former Postdoctoral fellow in the lab of Dr. Kathleen Martin Ginis, and Alanna Shwed, a current PhD candidate in Dr. Heather Gainforth’s Lab, approached ICORD Managing Director, Nancy Thorogood, to plan a 40-person event with ICORD members, but the event expanded into an ICORD SCI Partnership Workshop with 70 attendees that took place on October 20 and 21.

Previous research with ICORD has shown that we do have the infrastructure to foster connections between researchers, people with lived experience of spinal cord injury, and other organizations, but needs a culture shift to understand why partnerships are important. The workshop focused on providing opportunities for partners to connect, building capacity for cross-disciplinary and cross-campus collaborations, gaining knowledge on the guiding principles of SCI research partnerships, identifying strategies to engage with partners in research, and understanding what is needed to further support partnerships at ICORD. This was accomplished through presentations, panel and roundtable discussions, and unstructured social events.

Follow-up activities will involve summarizing the large amount of ideas shared by all the attendees and continuing to keep the momentum moving to enhance and build capacity for research partnership at ICORD – stay tuned.

Big thanks to all the partners and funders who made the ICORD SCI Partnership Workshop possible.

Help us do research

Interested in helping ICORD researchers make SCI preventable, livable, and curable? These research studies (and more) are in need of participants!

Fear of falling and exercise self-efficacy in people with neurological disabilities who can walk: relationships between physical functioning and psychological outcomes

The SCI Action Canada Lab, under the guidance of Dr. Kathleen Martin Ginis, invites adults with spinal cord injury (SCI) whose primary mode of mobility is walking, to participate in a series of tests related to: balance, sit to stand. Read More…

Non-invasive spinal cord stimulation in acute spinal cord injury for recovery of autonomic function

Researchers from both Dr. Krassioukov and Dr. Berger’s labs are measuring the effect of non-invasive spinal cord stimulation on the recovery of bladder, bowel, sexual, heart, motor function, and muscle spasticity for people living with SCI. The study will also examine the impact of spinal cord stimulation on overall quality-of-life. Read More…

 

Canadian SCI Pain Survey

Dr. Martin Ginis and her team invite Canadian adults with SCI to take part in a survey aiming to assess the current state of pain intensity and pain treatment methods. The survey will explore factors that impact the pain experience, such as: emotions, personality traits, anxiety, depression, support systems, resilience, sleep, and exercise habits. Learn More…

 

Click here to browse all the ICORD studies currently recruiting participants.

Interested in participating in ICORD research but feeling overwhelmed by the number of studies?

Our Study Liaisons are here to help!

Interested in participating in ICORD research but feeling overwhelmed by the number of studies? Meet our new study liaisons, Sam Douglas and Ali Williams!
Ali is the manager of Dr. Tania Lam’s Human Locomotion Lab, and Sam is an IT Support Analyst at Praxis Spinal Cord Institute.
Sam and Ali will work with you to narrow down what studies you may be eligible for. Over a few short phone calls, they will ask you questions about your research interests as well as common study inclusion and exclusion criteria. From there, they will tailor a list of research studies for you and provide details and contact information for each one. They can also directly connect you with study coordinators if you like.

Send them an email to begin your consultation!

Partner news

SCI BC Online Holiday Auction

SCI BC is excited to bring back its beloved Online Holiday Auction for another year! From November 18 until December 2, you have the chance to bid on a variety of amazing items, just in time for the holiday season. By participating in our online auction fundraiser, you can share in the joy of giving by purchasing a gift for yourself or someone you love, and give back to your community at the same time.

All proceeds from this fundraiser will be put towards SCI BC’s Peer Support and Information Services Programs. These programs help the 12,000 British Columbians living and aging with spinal cord injuries and related physical disabilities receive the support and knowledge they need to live well and be active participants in their communities.

APN2025 registration open

Early Bird registration is now open for APN2025: Building for People — Canada’s premier conference on accessibility in the built environment. This year’s conference will take place at Vancouver Convention Centre in Vancouver, BC and virtually online on Thursday, March 27 and 28, 2025.

The APN2025 theme of Building for People encourages attendees to explore accessibility holistically from the perspective of the users at the centre. It inspires us to think about how someone truly uses a site, going beyond minimum requirements and current practices to create a truly inclusive world.

The conference brings together architects, engineers, designers, planners, staff from all levels of government, individuals working in Diversity, Equity and Inclusivity (DE&I), Accessibility Professional Network (APN) members and corporate leaders, among others, to collaborate on how together we can create an accessible built environment for all.
Register Today!

Read Praxis Annual report 2023 on Inclusivity and Engagement

What does real inclusivity and engagement look like? It means actively involving people with disabilities, like asking them how they manage during extreme heat events. It looks like PLEX (persons with lived experience) mentoring in our SCI Commercialization programs, where companies receive one-on-one guidance to shape innovations that truly matter to those affected. It’s about amplifying PLEX voices, ensuring they are heard and have a seat at the table. Read the report here.

RHSCIR celebrates 20 years of collecting SCI Data

This year marks the 20th anniversary of the Praxis-led Canadian SCI Registry (RHSCIR), which has made remarkable progress and accomplishments in the field of spinal cord injury research and care. The registry has grown over the years, and now includes 30 sites across Canada. It has contributed to the creation of a strong national network that aims to improve the lives of those with spinal cord injuries.
Learn more about the registry

Praxis welcomes new SCI Accelerate program Cohort

Praxis SCI Accelerate is a 12-week, in-residence accelerator program dedicated to advancing the development of innovative technologies that can transform the lives of individuals with spinal cord injuries.

  • Bowhead Corp designs cutting-edge bikes, wheelchairs, and adaptive solutions for people with mobility disabilities.
  • Dignify Therapeutics is advancing two drug platforms for on-demand defecation and urination, alongside an implantable neuromodulation platform.
  • NeoMotion, incubated at IIT Madras, creates transformative products for the physically challenged and elderly.
  • Reachable Technology focuses on assistive technologies that empower individuals with disabilities to achieve greater independence.

Learn more

Thanks for reading this issue of The ICORDian – we hope you enjoyed it! Please subscribe and have future issues delivered to your inbox. If you have any comments about this issue or suggestions for future ones, please contact us.

 

 

 

Jocelyn Chan, Aliza Hirsch, Alison Williams, Tania Lam, Sabba & Farah, Analisa Jia, Ed Pitt-Brooke, Xueqing Zhou, Brett Goldhawk, Nancy Thorogood, Heather Gainforth, Alanna Schwed, Brian Kwon, and Cheryl Niamath for their contributions to this issue of our newsletter.