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Johnian crowdfunds for pioneering multiple sclerosis treatment for fellow student

Image credit: Halcyon Weber

A PhD student at St John’s has started a JustGiving page to raise money for pioneering treatment for a friend and fellow student who suffers from multiple sclerosis. 

Joseph Rennie, who is studying for a PhD in cognitive-neuroscience at St John’s, has started a fundraising drive to raise money to allow fellow student Halcyon Weber to receive pioneering medical treatment for her multiple sclerosis (MS) in Mexico.

Halcyon, who is studying for a PhD at St John’s in Roman Legal History, faces daily struggles with mobility, exhaustion and brain fog caused by MS.  The condition causes the immune system to attack a substance called myelin that protects the nerve fibres in the central nervous system. The damage this causes disrupts messages between the brain and the rest of the body and often leaves scars known as lesions or plaques in the brain.

Before coming to St John’s, Halcyon, who was diagnosed with MS in 2007, worked as a human rights lawyer, providing legal representation for refugees.  She left the legal profession due to the exhaustion brought on by MS and its effect on her ability to walk, stand, talk and think.

The life-changing impact of her illness has not stopped Halcyon in her pursuit of a PhD and she is currently over halfway through her project. She has also had parts of her research published and presented her work at international conferences.

However, MS is a degenerative condition and Joseph has started the fundraising drive to help pay for pioneering treatment that could halt the progression of Halcyon’s illness.

The treatment, called hematopoietic stem cell transplant (HSCT), works by using chemotherapy to wipe out the immune system before transplanting stem cells taken from bone marrow in order to establish a new immune system, free from the flaws which first led to MS.

HSCT has only been approved by the NHS for people with a type of MS known as “relapsing and remitting” where people experience distinct attacks of symptoms which then fade away. However, the treatment is offered to patients like Halcyon, who suffers from a progressive form of MS, in Mexico.

 “Halcyon is a very strong person and strives to be as independent as possible,” Joseph said. “I was very keen to help raise funds for her treatment because I want to see her continue to enjoy life and carry out her research.

“Halcyon has always been greatly encouraging of me and my studies, and is undoubtedly very supportive of other students in general. I believe she deserves this opportunity and it is the least I can do to help her meet her target.”

Joseph aims to raise £32,069 for Halcyon’s medical costs. Overall, the treatment will cost £55,000, but Halcyon has already covered a portion of the expenses by contributing her savings and through her own fundraising.

Halcyon said: “I am really grateful for this support from Joseph and my fellow students at John’s. There is a growing body of evidence that HSCT can halt the progression of my type of MS and the Mexican clinic has shown very impressive results. I am hopeful that this treatment can help me to maintain my current quality of life, however I need to act quickly to prevent my disabilities from becoming more advanced.”

To donate to Joseph’s fundraising bid, visit his JustGiving page: https://www.justgiving.com/crowdfunding/joseph-rennie