Sat, 25 Nov|
Q&A with AIMS, Mindy, Gwen & Simone
Mindy & Gwen: An open discussion about past, present and future of HSCT in the UK. Simone: An honest and transparent conversation about life in a dual role of wife and carer
Time & Location
25 Nov 2023, 16:00 – 16:30
Drawing Room, Cutler's Hall
About the event
Alison Coates (AIMS)
Since co-founding AIMS 5 ago, Alison is still regularly surprised by the lack of awareness of HSCT in the MS community. AIMS seeks to raise awareness of HSCT, and also provides travel grants for UK residents undergoing HSCT in the UK and overseas.
AIMS also provides a free peer support service for anyone wanting to know more about HSCT. AIMS works with the MS Society and the MS Trust in relation to HSCT, and won an international award for Innovation from the MS Brain Health Awards earlier this year.
Alison recently published ‘The Neutropenic Cookbook’ to support people with a low immune system following HSCT.
I was diagnosed with PPMS in 2009. I found out about HSCT by searching online, but my neurologist was very dismissive, despite no other treatment being available at that time. My condition was deteriorating fast, so when I was offered HSCT by Dr Fedorenko I was very grateful to accept and had treatment in Moscow in 2014. My EDSS was halted at 5.5 to 6.0 and remains that way nine years later.
In 2015, Mindy Watt and I set up a Facebook group with the aim of informing other UK citizens with autoimmune disorders about HSCT. We were joined later by Alison Coates and were so proud when Alison and her team set up the AIMS charity - the only UK charity to focus on HSCT. HSCT can be life changing and patients deserve to have it as a treatment option. AIMS has gone from strength to strength and is a testament to the determination of well-informed patients to promote HSCT as an early treatment for MS and other autoimmune disorders.
I was diagnosed with MS in 2014 and only found out about HSCT from an American website. I tried hard to persuade the UK to transplant me, but the neurologist I was seeing thought I was completely mad, so I went to Dr Federenko in Moscow. My EDSS has dropped from 6.5 to 2.5.
AIMS are the only Charity in the UK that focuses on HSCT. I am proud to have been allied with them from their very first day. The support and advice they give is absolutely essential as the UK moves forward to making HSCT a first-line treatment choice.
Mindy has recently been presented with the Patient Advicate Award in the MS Brain Health 2023 Awards