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Trustees Laura, Janet, Preeti and Damien Share Their Thoughts on the AIMS 5th Birthday Summit

Updated: Sep 16, 2023

Laura, Janet, Preeti and Damien will be at the AIMS Summit and you can be too! Click the button below to buy your tickets to be at this first-of-it’s-kind patient event:

Laura: I am really excited to be part of a world first event that brings together the leading world experts in the field of HSCT for MS. I am looking forward to hearing their thoughts on the future of HSCT for MS and what that will really mean for patient choice.

When I was diagnosed with highly aggressive MS, I found out about HSCT that very evening but was denied the opportunity to even discuss this as a possible treatment by my medical team who brushed it off as ‘dangerous and experimental’. I was progressing quickly and had accumulated a fair amount of disability within 2 years of starting a ‘top line’ DMT. I was, quite frankly, petrified about the future for both me and my family. I was forced to self-advocate and sought HSCT with absolutely no support from my medical team. I am now 4 years post and have my life back. During the 2 years I spent researching HSCT before I had the treatment, I witnessed the birth of AIMS and avidly followed James Coates’ story. I joined AIMS as a Trustee as soon as the opportunity arose to pay forward and help others to access reliable information to enable them to self-advocate.

The AIMS 5th birthday summit is a going to be a ground breakiing opportunity to hear from a stellar international line up of the leading lights in the field of HSCT. I believe it is the first event of its kind, giving unique access to their expertise in one place. It will be an amazing opportunity to learn from them and to hear about what the future may hold as HSCT develops and hopefully becomes available as a first line treatment option to many more people with MS.

In 2015 I was suddenly hit with a massive relapse completely out of the blue. Until that time I had no idea that I had MS. Within 18 months I was diagnosed with SPMS and an EDSS of 6.5. I was incredibly fortunate to be able to have HSCT 2 years after diagnosis and more than 6 years on I remain progression free. My only regret is that I could not access HSCT before my disability was so advanced because the damage was already done. My hope is that by becoming a trustee with AIMS I can contribute to improving access to information and support for other people with MS and other Autoimmune conditions. Ultimately I would like to see HSCT available as a first line treatment option.

AIMS 5th Birthday Summit promises to be a world first in bringing together renowned experts; doctors, professors, patients, exhibitors and a wide spectrum of people passionate about HSCT and MS treatments. The knowledge that will be shared during the Summit will be inspiring and I cannot wait!

I was diagnosed in 2004 with relapsing remitting MS and suffered a big relapse 2 months later, leaving its neurological scars, as relapses sometimes do. After stumbling across HSCT in 2015/16, I followed many patients’ HSCT treatments and despite leading neurologists telling me in no uncertain terms not to pursue HSCT, I had my treatment in 2018. I no longer live on a knife‘s edge, HSCT has halted progression. AIMS Charity began with a handful of people passionate about HSCT, 'spreading the word' and informing and assisting people with MS.

It has grown into a highly respected charity and I am honoured to be a trustee.

AIMS 5th anniversary summit is going to be a unique event where the pioneers and experts of HSCT for MS will all be under one roof, and people will have the opportunity to hear and chat to them face to face. This is definitely a ground breaking achievement for the MS community. I am proud of being a veteran, a volunteer and a trustee for AIMS, and am so looking forward to being part of this knowledge that will educate, allow people to make an informed choice, and make a difference for people struggling with MS and many other autoimmune disorders.

I was diagnosed with aggressive relapsing and remitting MS in 2018, where I suffered many relapses within a year. I was given many drugs options in those glossy pamphlets, which seemed really daunting. There was not a single mention of HSCT, which I thought was criminal. I felt that people should at least have a choice to know what HSCT is about.

Since I found out about this treatment and went through it, there is no looking back. I feel that I am now MS FREE! Therefore my sincere hope is that everyone living with this debilitating disease should have an opportunity to make an informed choice about HSCT and for the NHS to allow it to be accessible as a first line treatment.



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