A new multiple sclerosis charity has appeared in the UK, inspired by one successful HSCT treatment, provided free of charge by the country’s National Health Service (NHS). It is the first charity dedicated to autologous hematopoietic stem cell transplantation (HSCT) for MS patients living in the UK.
The treatment was given to James Coates two years ago. His story can be read here.
James and his wife Alison are now behind the launch of the AIMS (Auto Immune and Multiple Sclerosis) charity.
Alison explains: “James was lucky enough to access HSCT on the NHS, and we wanted to give something back. We were also very frustrated at reports of misinformation given to patients by their neurologists and other MS agencies.
“Such misinformation includes a much higher mortality rate than is accurate, and that HSCT wouldn’t be suitable for them because they have progressive MS. In fact, HSCT halts progression in the overwhelming majority of patients irrespective of MS type. There are also general inaccuracies about the criteria for NHS acceptance – and that’s still happening every day.
“We wanted to do something to put the record straight and all our trustees feel very strongly about that,” she said.
AIMS itself received confirmation of its registered charity status on April 11 this year (registered chatity 1177907). Its primary objective is to signpost to qualified medical specialists during the patient’s research phase, with a view to providing grants as its funding income is developed.
Alison says: “Essentially, AIMS intends to signpost for other hematologically-routed AI diseases (ie: CIPD, Lupus and Systemic Scleroderma) as these conditions, in addition to MS, are treated with HSCT at Clinica Ruiz in Puebla, Mexico, and AA Maximov hospital in Moscow, Russia. Further recommended clinics may be added later.
Main focus on MS
“Our main focus is on multiple sclerosis patients. We plan to offer both financial support AND signposting to UK-based MS patients who are accepted for HSCT in the UK or at either of the above facilities, as MS is the disease that is currently treated within the UK on the NHS.”
Every charity has to have trustees and, for AIMS, those trustees rightly include both James and Alison. But the couple’s involvement doesn’t stop there. James heads the charity’s finance team, while Alison leads the publc relations and media team.
On December 1, AIMS charity will be holding its first major fundraiser – a super black-tie dinner, with entertainment. It will be selling tables of 8 and 10 for an event that will double as its ‘launch party. I know your support will be very much appreciated, so check out the charity’s Facebook page at https://www.facebook.com/aimscharity.org/.
James says: “We have run smaller fundraisers – our Trustee Paddy has participated in Tough Mudder for us, and we’ve received a number of donations – the December 1 dinner will be our first big event.
“We are hoping to raise upward of £50,000 annually, which would help many people to access HSCT and support them in terms of their travel expenses.”.
Looking to the future, AIMS proposes to support the travel expenses of UK-based MS patients. Initially, they must have been accepted for HSCT treatment in the UK, Clinica Ruiz in Puebla, Mexico and AA Maximov hospital in Moscow, Russia.
AIMS is quite clear that it will only give grants towards travel costs and funding will only be allocated to patients who have secured a place at a qualifying facility. It will not contribute towards the treatment itself.
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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.
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