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Connections
Spring 2021
Spring Connections 2021
Welcome to your online edition of Connections!
Here you will find some stories from our biannual newsletter, including an interview between scientist Dr Jessica Kwok and our ambassador Bel Young, news of our exciting research alliance and some examples of fundraising from our supporters.
If you would like to receive a printed copy, please get in touch with us at info@spinal-research.org and we will to get one sent out to you as soon as possible.
Collaborating for Speed
Spinal Research and the Christopher & Dana Reeve Foundation (Reeve Foundation) have recently announced a joint approach to their research strategies with a focus on accelerating the progress of therapies and their delivery to the millions of people around the world living with paralysis.
The Coderunner Guy
How do you combine a passion for creating art with keeping fit and raising money for charity? Just ask the Coderunnerguy.
Jeric Yeun describes himself as a "pocket rocket" (computer) coder, who "works fast, runs circles around code by day and runs marathons by night”. The thing that separates Jeric from the other runners plodding their way around the streets is that Jeric tracks his training runs through his phone’s GPS tracking to create digital art.
Using an application called Strava Art, the first GPS picture he drew was a human face in Glasgow as Jeric explains, "I was checking the local maps to see if there were any nearby parks to do some running when I noticed an area that looked like a human face. I decided to plot my training route and created my first GPS Art image, and I just carried on from there.”
And the Coderunnerguy has been busy during the lockdown, even creating a gorilla and a tree as part of a 42K long virtual London Marathon route.
This year, Jeric is planning to compete in the real-life London Marathon raising money for Spinal Research. A broken toe back in 2018 kept him on crutches for three months and inspired him to dedicate his running to help beat paralysis. He has already completed the 2019 Berlin Marathon, and is a proud and passionate member of #TeamSpinal!
You can help Jeric reach his fundraising target at virginmoneygiving.com/coderunnerguy
We will be profiling some of the Coderunnerguy’s new creations on our social channels as he prepares for the London Marathon in October and adds to his GPS Art.
Fancy creating your own GPS footprint in support of Spinal Research? You can create your own virtual running challenge or take part in one of our team running events, contact fundraising@spinal-research.org for more details.
Good Golly Miss Lolly!
In March this year Spinal Research Ambassador Lorraine (Lolly) embarked on her “sober cycling challenge”.
In 2004 Lolly’s life changed dramatically when a man jumped off a balcony and landed on her in a local nightclub. She sustained a C4/5 spinal cord injury and is now a wheelchair user.
Since her injury, she has thrown herself into the world of medical research and describes herself as a “Cure Girl on a mission to make spinal cord injury curable!”.
Using a special electrical stimulation cycle, Lolly has biked her way across 271 virtual miles in March, raising over £1500 to date.
You can still make donations by visiting justgiving.com/fundraising/lolly-mack1.
Lolly is already planning her next challenge, so watch this space! If you want to take on a new challenge in aid of Spinal Research, let us know and we can help - just email the team at community@spinal-research.org.
I would walk 500 miles
In January Caroline (Caz) Oldham set herself a huge 2021 New Year's challenge - to walk 500 miles in aid of Spinal Research.
10 years ago, Caz was faced with the need for emergency surgery to remove calcified discs (T8/9) from her spine. Performed across two major operations, the surgery was successful with Caz returning home after a prolonged stay in hospital.
Rehabilitation has been a challenge, but Caz has been able to transition from using a wheelchair to learning to walk again, initially using sticks for support. And although she still has to battle nerve pain, she is determined to meet her target.
"I would love to achieve my 500-mile target and be able to give something to Spinal Research to assist others with spinal cord injuries."
By April, Caz had already reached over 100 miles, and is feeling positive about the next few months!
You can track her progress, and sponsor Caz online by visiting justgiving.com/fundraising/caroline-oldham2
If you would like to undertake your own challenge to raise money for Spinal Research, contact the team at community@spinal-research.org.
Good luck Caz!
Meet the Team: Hannah Darnton
Quickfire questions with our new Fundraising Assistant and recent knitting enthusiast Hannah Darnton.
Q: Why is fundraising so important to a charity like Spinal Research?
Spinal Research doesn’t receive any funding from the government, so our supporters are our lifeline. They are the reason we are able to continue to fund research into spinal cord injuries. Ultimately, I want to help people raise money for causes that they are passionate about, whilst also creating awareness for the issue.
Q: What are you looking forward to in the role?
I’m most looking forward to meeting our incredible fundraisers! In my first two weeks I've already encountered fundraisers and donors who go above and beyond to raise money, and I can’t wait to meet more. Their dedication is inspirational, and I hope to learn from them!
Q: What do you enjoy doing outside of work?
During lockdown I started knitting, and I have finally managed to finish my first ever jumper! I also volunteer with Oxford Mutual Aid and can’t wait to start seeing my friends in person again.
Q: Where is the first place you would travel to after lockdown?
Anywhere outside of Oxford would feel exotic at the moment! But I’ve been eyeing up Costa Rica and Panama to practice my rusty Spanish in the tropics.
Q: Do you have any film or TV recommendations?
I’ve finally made it to the last season of Breaking Bad, and Married at First Sight Australia is my guilty pleasure.
Q: Do you have a message for our supporters and how can they reach you?
We love supporting our wonderful fundraisers and appreciate everything they do! If you’d like to reach out for advice, support or anything else, contact me at fundraising@spinal-research.org.
Zooming In
The next in our series of online interviews between our researchers and supporters takes place between Dr Jessica Kwok, Associate Professor of School of Biomedical Sciences at the University of Leeds and our Ambassador Bel Young.
Q: What have you missed most during lockdown?
Human connection! I really miss working with the team in my lab. I also miss travelling, both for work and leisure – having that interaction with different cultures and countries is something I really enjoy.
Q: Did you always want to be a scientist?
It wasn’t something I considered as a child. Going to university changed my view – in my first year studying biochemistry we had a neuroscience course during which we had to dissect a brain and it sparked my interest.
Q: How did you progress into your current position?
I completed my undergraduate and PhD in Hong Kong – working on a carbohydrate molecule known as chondroitin sulfate proteoglycan (CSPG) and its role in the human body. Towards the end of my PhD, I sought to learn about the role of CSPGs in disease and looked for experience outside of Hong Kong. I did further study in Cambridge, where I became a Senior Research Associate and I’m now working at the University of Leeds.
Q: Can you tell us simply about your area of research?
Following my interest in CSPGs, I found that this molecule is produced by the body around the site of a spinal cord injury. Unfortunately, it appears to block important nerve connections and inhibits regeneration. In the last decade or so, we’ve discovered ways to remove this molecule from the site of injury in order to encourage recovery.
CSPGs are also present on the surface of spinal cord neurons – like the plastic coating on an electrical cable. In order to make new connections you have to remove this plastic, rewire, then replace the plastic again. Once new connections are established, you can replace that CSPG layer and they will function more efficiently.
Q: How will this help someone with a spinal cord injury, like me?
If we remove CSPGs from the site of injury, there will be a greater chance of nerve growth – this is known as enhancing plasticity. There is no magic potion to regain complete function, but partial recovery is achievable and will benefit both new and long-term injuries.
Q: Does length of time after injury affect the outcome of the research?
No. Previous studies using animal models with chronic injuries have shown that downregulating CSPGs is sufficient to recover respiratory function after just one week of treatment.
Q: What is the current state of play in terms of progress?
There are lots of stabilising treatments after SCI but few treatments for regeneration. While current rehabilitation treatment does promote plasticity, it’s insufficient to enhance functional recovery. However, if we can access the surface of these neurons by opening this CSPG coat we can maximise the formation of more synapses.
Q: How can someone like me (SCI community and supporters) help you work?
As we know great research requires funding, and there are unique challenges with SCI research: 1) regeneration takes a long time meaning that results take longer and research costs are higher and 2) the number of people affected by an SCI is relatively low, so big companies often focus on more common conditions. Living with SCI is difficult and expensive in terms of care costs across a whole lifespan.
Communicating to large funders and other bodies that an SCI comes not just with a great emotional cost, but also a great economic cost. This will further highlight the importance of supporting SCI research.
If you would like to take part in our series of interviews with our scientists and researchers, just let us know. Please-email media@spinal-research.org.
Research Updates
COVID and beyond
Like many of us, our researchers have had to adapt over the last 12 months to a new way of working. However, our important research projects have continued progress during the lockdown and are moving towards full capacity as restrictions ease in the UK.
Where needed, social distancing and associated safeguards are in still in place, and we have extended some deadlines to ensure successful completion of PhD projects.
As the vaccination programme continues to roll out effectively, most of clinical projects are now actively engaged with their subjects. During the challenge of the pandemic research has continued on a best-efforts basis and despite the restrictions, delays and restarts, we’re pleased to say that we have, until now avoided having to abandon any of our funded projects.
Advisory Committee Changes
We have recently appointed four new committee members to our Grant Advisory Committee. Comprised of leading experts in the field. This committee provides valuable feedback on research applications. Our new members are:
Dr Florence Bareyre, Ludwig Maximilians University Munich. Her research focuses on axonal remodeling and neuronal activity to enhance functional recovery.
Dr Andras Lakatos is an academic researcher and consultant Neurologist at Cambridge University. His main interest is finding novel targets for human therapeutics.
Dr Mariel Purcell is a consultant at the Queen Elizabeth Spinal Injuries Unit Glasgow, and a Senior Lecturer at the University of Glasgow. Mariel is also a lead scientist on one of our funded projects, using electrical signals to maximise latent function after SCI.
Dr Jessica Kwok is an Associate Professor at University of Leeds. Find out more about Jessica in this issue of Connections!
Spinal Research would like to welcome the new members to the advisory committee and thank them for the important role they will play in helping us take our research forward.
Jamie's Memorial Virtual Fun Run
Friends, family and Spinal Research supporters came together online to celebrate the life of Jamie Hay through a virtual fun run held on 11 April.
Planned to coincide with his birthday, the event has been organised by his cousin Natalie Hay to raise money for crucial research into beating paralysis. Jamie was paralysed in 2010 through a road traffic accident, and tragically died four years later in August 2014.
With support from Jamie’s family, Natalie has taken time out from her busy job to organise the virtual event.
“I organised the event for my big cousin Jamie, to keep his legacy alive and fund research which will help stop families going through the same traumatic experience”, Natalie explains. “I am overwhelmed by the support from everyone who knew Jamie.”
Uniting online for Jamie
Over 90 supporters took part this year from all over Ayrshire. To date, the event has helped raise over £13,600 already for Spinal Research.
Natalie and her family would like to thank all those who took part this year, as well as those who contributed online.
“I’m so touched with everyone signing up and raising money for spinal research. He certainly was a much-loved boy.” said Linda Hay, Jamie’s mum.
Jamie’s fundraising page is still open for donations at www.justgiving.com/campaign/jamiesfunrun
If you would like to find out how you can run an event in memory of a friend or family member, please email community@spinal-research.org, or call (020) 7653 8938.