‘Putting something back’ links determined people behind newest HSCT charity

It was almost two years ago that, through this site, I brought you the welcome news that a new charity had appeared, inspired by one successful HSCT treatment that was provided free of charge by the country’s National Health Service (NHS).

And it was and is the desire of the recipient James Coates, and that of others who would go on to become trustees, to ‘put something back’ that led to the founding of the charity.

AIMS, or to use s full name, Auto Immune and Multiple Sclerosis, the first charity dedicated to autologous haematopoietic stem cell transplantation (HSCT) for patients living in the UK. And, perhaps it is a model that could be followed in other countries around the world.

I certainly think it is a real step, nay a stride, forward in the UK and, hopefully, its success there will have a knock-on effect globally.

Now, before going any further, it must be made quite clear that I am neither a trustee nor in any way connected with the operation of the charity. However, my embracing of HSCT as a viable treatment for MS is well-known, and so my desire for this charity to succeed should come as no surprise.

Therefore, I feel privileged to be able to accept the honorary role as an AIMS Advocate. It won’t change what I say, it’s more a recognition of what is already being said.

AIMS is set up to preserve and protect the health of patients suffering from MS and autoimmune disease in the UK. It achieves this by providing and assisting in the giving of signposting, advice, support services, and grants with particular emphasis on those seeking HSCT.

The story so far

The idea for the AIMS charity arose back in March 2017. Over the next 12 months they appointed trustees, started quarterly meetings and launched a number of fundraising campaigns.

Dr Denis Fedorenko and Anatasia Panchenko (centre) with AIMS trustees(from left) Paddy McCormack, Becky White, Alison Coates and James Coates.

In April 2018, it became a registered charity with the Charities Commission and that August its charity bank account was approved.

An evening ball at Aston Villa Football Club was held in November of the same year to officially announce the launch of AIMS.

Dr Ruiz from Mexico’s Clinica Ruiz.

This was attended by more than 200 people from all over the world, including the primary physicians, Dr Denis Fedorenko and Dr Guillermo Ruiz Argüelles from the endorsed facilities in Moscow and Mexico, respectively.  Janene Madden, CEO of HCA Healthcare, represented the HSCT team at the UK’s London Bridge Hospital.

Janene Madden, CEO, HCA Healthcare, London Bridge Hospital.

Not only was it a great way to launch the charity and raise money, but also successful in to raising awareness of what AIMS is all about. In fact, it led to many of AIMS’s supporters raising funds for the charity.

Looking ahead

The trustees’ primary goal for the rest of this year is to be able to continue awarding travel grants for patients pursuing HSCT in the UK and at AIM’s endorsed facilities in Moscow and Mexico. So far, 15 grants have been awarded but that is expected to doubled by the end of this year.

They realise that to achieve that, and to ensure that grants become sustainable over the long term, they must focus strongly on fundraising. To this end, the trustees are committed to investigating any available revenue streams to maximise fundraising efforts. Their goals now are to continue to grow and to recruit more volunteers and trustees.

The charity also wants to strengthen further its relationships with the facilities who treat MS patients with HSCT, in the UK and abroad, to ensure them to support the cause.

It plans to build on partnerships developed through visiting and filming in Mexico and filming and speaking in Moscow at their conference. AIMS representaives have also spoken at London Bridge and will be speaking at STAR MS’s HSCT symposium next month in Sheffield.

Who’s in charge? Here’s the AIMS team

The charity is run by trustees who are unpaid. The trustees are:

Paddy McCormack  Chairman

Paddy’s interest in MS and HSCT stems from his day job. Paddy works as an estate agent, and on one of the luckiest days of his life he sold a property to a young lady who has MS.

This young lady is Becky – another AIMS trustee. Becky was diagnosed in 2014 with RRMS (Relapsing MS) and managed it well, coping with the fatigue of various transatlantic holidays until her symptoms began to change. In January 2016, Becky was re-diagnosed with SPMS (Secondary Progressive MS). After many scans, tests and consultations, Becky was offered HSCT at Hammersmith hospital, London in March 2018

The courage and fight Becky had shown since her re-diagnosis has inspired Paddy to the point where he felt compelled to try to help as many people as possible with MS combat this hideous disease.

Alison Coates  Secretary

Alison is married to James (Treasurer) and is mum to two grown up daughters – and, she says, a very needy cat. She is a learning and development manager, with a background in speech and drama.

In her spare time, Alison likes reading, theatre, cooking, and seeing the world – something she and James have been able to do much more of since he had HSCT in 2016.

James Coates  Treasurer

Diagnosed with MS in 2011. Initially, he was able to carry on as normal. However, the progression of his MS seemed to accelerate in 2015, transitioning to SPMS, which prompted him to seek treatment. Alison came across HSCT, and James was very fortunate to be accepted for the transplant in UK on the NHS.

He was treated in July 2016 at King’s College Hospital in London. James says he feels like HSCT has given him his life back, so he would like to help others to receive this treatment, with the ‘AIM’ of giving them their lives back too.

Becky White  Trustee

Becky was diagnosed with RRMS in December 2014 and it became very aggressive in 2016 when it was suspected to have transitioned to SPMS. I began fundraising for HSCT in Mexico or Moscow and started researching HSCT.

After many difficulties with her local neurologist, she transferred neurological care to London and was referred to the multi-disciplinary team meeting (MDT) in May 2017. Initially, she was turned down but continued to push and was accepted for HSCT at Hammersmith Hospital in July 2017.

Her most recent MRI scan shows no further progression of MS and many existing lesions have disappeared. Before HSCT, Becky was rated 6 EDSS (Expanded Disability Status Scale), and now she scores just 1.

Becky says she received so much support, advice, and guidance from forums, she became a trustee of AIMS in the hope that she can help others with this difficult journey.

Mark Rye  Trustee

Much like Becky, Mark was fortunate enough to have qualified for HSCT under the UK NHS criteria in 2016 and had the procedure carried out in Hammersmith, London. It was whilst he was going through the procedure that he decided that he would help try to raise awareness of HSCT – then AIMS came along. A calling, some might think!

Since his transplant, Mark has become stronger in some areas with no medical intervention other than yearly consultancy appointments. Mark’s life has changed, and he has a future with his family – now, he says, it’s time to give something back.

Mark is married with two very young boys who keep him on his toes. He works full-time as the Head of Quality and Compliance for an educational charity in Surrey. Mark has over 25 years volunteer and charity experience at all levels and holds degrees in charity management and volunteer leadership and management.

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Spelling

Please note that being born in the UK, all my posts, are written using British English spelling.

For example:

Centre                             not center (except in names, Centers of Disease Control)                  Colour                              not color                                                                                                                      Diarrhoea                       not diarrhea                                                                                                  Haematology                not hematology                                                                                Haematopoietic          not hematopoietic

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50shadesofsun.com is the personal website of Ian Franks. 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. More recently, he was a freelance medical writer and editor for various health information sites. 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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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. Ian is not a doctor, so cannot and does not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely his own unless otherwise stated.

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