Journalist with MS, Honorary Research Fellow & Founder of the Rachel Horne Prize for Women's Research in MS
You may be here because you have come across an article I have written, a social media post of mine - or to find out more about the Rachel Horne Prize for Women's Research in Multiple Sclerosis.
Hope this helps.
About Me
In 2009, I was diagnosed with multiple sclerosis (MS). In hope of making sense of such an unpredictable disease, I started attending MS conferences, interviewing healthcare professionals and writing articles as author/co-author for publications such as The BMJ, Nature Reviews Neurology and Neurology.
Through my family foundation in Canada, I also began supporting a wide range of MS initiatives including the establishment of the Rachel Horne Prize for Women's Research in MS - an annual award of US$40,000, which recognises a female scientist for her outstanding research into women with MS.
I am currently co-chair of the Patient and Public Engagement Group - part of the National Institute of Health Research (NIHR) Policy Research Unit in Dementia and Neurodegeneration based at Queen Mary University of London (QMUL). Since 2022, I have been an Honorary Research Fellow at QMUL.
I am currently on Ocrevus, my third disease modifying therapy to treat my MS.
The effect of patient involvement on MS. Research learning from 10 years of the Barts MS Advisory Group
Poster at ECTRIMS/ACTRIMS Joint Meeting, Milan
2023
Authors: Alison Thomson, Heather Mah, Talat Ahmed, Patrick Burke, Bonnie Boskovic, Christine Chapman, Elizabeth Colwell, Mark Harrington, Rachel Horne, Troy Rice, Ruth Dobson, Klaus Schmierer, David Baker & Gavin Giovannoni
Podcasts & Transcripts
BBC Radio 4
I spoke with host James Gallagher about how people with MS are reacting to the ground-breaking news EBV and MS are linked. Programme includes interviews from key MS experts: Prof Alberto Ascherio, Prof William Robinson and Prof Gavin Giovannoni.
RealTalk MS with Jon Strum
Episode 322
2023
From ECTRIMS, I join host Jon Strum and Prof Rhonda Voskuhl, the inaugural winner of the Rachel Horne Prize, to discuss why MS affects men and women differently and what we should do about it.
Rachel Horne Prize for Women's Research in MS
"A prize for women for their work helping women. Because when she wins, all the women who have MS win."
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The Rachel Horne Prize for Women's Research in MS is an annual award of US$40,000, recognising a woman scientist for their outstanding contribution to women's health-related research in multiple sclerosis.
Supported by International Women in MS (iWiMS), the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS), and Americas Committee for Treatment and Research in MS (ACTRIMS), it aims to promote and reward the essential role of women in the field of MS research.
Nominations and applications for the 2025 prize are now closed.
Applications for the 2026 award will be announced in February 2026.
Further details can be found on the Rachel Horne Prize website.
Patient Advocacy
Co-Chair Patient and Public Engagement Group, DeNPRU-QM
2024-2027
Co-chair of the monthly Patient and Public Engagement Group (PPEG), part of the National Institute of Health and Care Research (NIHR) Policy Research Unit in Dementia and Neurodegeneration based at Queen Mary University, London (De-NPRU-QM).
Moderator ECTRIMS webinar
Initiative on Women's Health
2024
Moderated ECTRIMS webinar ​Initiative on Women's Health - Review of Unmet Needs featuring Prof Ruth Anne Marie, University of Dalhousie, Asst Professor Lindsay Ross, Cleveland Clinic Mellen Center and Professor Mar Tintoré, Catalonio MS Center (Cemcat) and Vall d'Hebron University in Spain.
Moderator
Women and MS/Shift.MS panel discussion
​ECTRIMS/ACTRIMS Conference
Milan 2023
Chaired a discussion of the specific health challenges women with MS face - such as family planning, pregnancy and menopause - while also managing the disease.
Panel from left:
Birgit Bauer, MS patient & advocate; Rachel Horne, Panel Chair;
Prof Ruth Dobson, world-renowned MS expert; Roberta Motta, MS Nurse; and Roberta Incardona who lives with MS
MS Philanthropy
I have donated more than a million pounds to support MS research in the UK through my family foundation. Much of my support has been to kick-start hard to fund MS research. I also support projects which are aimed at women with MS and their specific health needs.
My earliest donations supported the work of Prof. Alasdair Coles and Prof. Alastair Compston at the University of Cambridge in developing alemtuzumab/Lemtrada - one of the first highly-effective drug treatments for people with relapse-remitting MS. Subsequent giving supported two neurology trainees working with Prof. Coles to develop repurposed drugs as potential remyelinating therapies in MS.
In 2016, I began working with Queen Mary, University of London (QMUL) and in particular with Prof. Gavin Giovannoni, Chair of Neurology. I supported the #ThinkHand campaign which was critical in securing funding for Prof. Klaus Schmierer's CHARIOTMS trial. This ground-breaking multi-sited study investigates whether the drug cladribine can maintain arm and hand function in people with more advanced MS.
Further research initiatives include testing the impact of anti-vial drug famciclovir on Epstein-Barr Virus (EBV) shedding in people with MS and, most recently, funding a three-year research programme looking at the diagnosis and management of infectious mononucleosis led by Prof. Giovannoni.
PhD support
Integral to my giving is funding more than half a dozen PhD fellowships linked to MS research. These include:
- the impact of social capital on people with MS (QMUL)
- MS and patient experience of menopause (QMUL)
- Epstein-Barr virus and memory B-cells in MS (QMUL)
- extracellular vesicles in MS (QMUL)
- the impact of domestic violence and abuse on people with MS (University of Leeds) and the response of health care professionals (University of Nottingham)
Of particular importance to me is directing funds towards projects that directly support women with the disease - as I believe our specific health needs have been routinely overlooked by the MS scientific community.
For example, one project includes financing the establishment and initial costs of the UK MS Pregnancy Register set up by Prof. Ruth Dobson (QMUL). More recently I have underwritten the creation of the MS Domestic Violence and Abuse Research Initiative at the University of Leeds and University of Nottingham.
Non-MS Philanthropy
Over the years, I have supported a number of projects which have supported women and girls around the world.
These include regular donations to Ethiopiaid Canada and their partner AWSAD, a charity which runs safe houses in Ethiopia for survivors of domestic violence and abuse. I also donate annually to Friends of Ibba Girls' School, a residential girls' school in Southern Sudan.
At the AWSAD Safe House, Addis Ababa, Ethiopia
