Charity AIMS to help MS patients to have HSCT

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.

AIMS

Alison and James Coates.

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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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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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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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. I am not a doctor, so cannot and do 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 my own unless otherwise stated.

MS Walk discount for early registration

Every charity associated with any kind of disease, disorder or other health issue always needs to raise money. This may be used for all-important research, much need care, or raising public awareness.

Multiple sclerosis societies in countries all over the world are no different in this respect. Their work all needs money.

The UK’s MS Society is holding one of its major fundraising events, the popular MS Walk, in September. And there is a special offer for anyone who wants to take part.

So, anyone planning to signi up to join the walk should do so by this Wednesday, that’s July 12. That way they can take advantage of a 20% discount on the cost of the registration fees. These are £15 for adults, £7 for under 18s and free for five years and under.

ms walk

Having fun at last year’s MS Walk. (Pic: MS Society).

Helen, of the society’s community and events team, says: “Registration is now open for the annual MS Walk and for one week only, we’ve got a special offer on our sign-up fees! As the offer is only open until the July 12, so you need to be quick to avoid disappointment.”

Furthermore, anyone who wants to walk, roll or stroll, every step will take the society closer to its goal.

Hundreds of MS Superstars, friends and families, will join forces in London to take in the sights and raise funds to stop MS.

Both the MS Walk’s short and medium routes are fully accessible and all three start and finish in Battersea Park. At the end of the challenge the society will celebrate everyone’s achievement with food, drinks, music and fun in the park.

The three routes are:

  • Short / 6km route – Fully accessible
  • Medium / 10km route – Fully accessible
  • Long / 20km route – Please get in touch with the society if you’d like to find out more about the accessibility of this route.

Helen continues: “MS Walk is fun for the whole family. They can walk or wheel one of three picturesque London routes on Sunday September 24.

“Last year, Paralympic swimmer and MS Society Ambassador, Stephanie Millward, walked with us. Stephanie lives with MS, and wasn’t sure about taking part.”

MS Walk ‘believe you can’

Stephanie was made an MBE in the Queen’s New Year’s Honours list. She explains: “When I was asked to attend the MS Walk, I thought ‘Me? Can I do a five, 10 or 20 kilometre walk? No chance. I would never be able to do that.’ But then I thought ‘yes – you can do anything if you believe you can’.”

If you feel inspired to join in the fun and help the MS Society turn the streets of London orange this September, register now.

And don’t forget to sign up by Wednesday to take advantage of the special offer to gain a 20% discount!

To register go to https://www.eventbrite.co.uk/e/ms-walk-2017-registration-34660345025 and use the code MSW20 to get the 20% discount.

After signing up, all participants will receive:

  • An MS Society orange t-shirt
  • An event day pack with detailed maps and information
  • An invitation to a fantastic post-event celebration in Battersea Park
  • Lots of tips and advice from the MS Society team to help them raise as much as they can
  • Support on the day from MS Society staff and volunteers

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. 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.

The gift of yourself must be included on Giving Tuesday

gift-never-wasted

December is here and we have been out and about. We had a delicious lunch on the terrace of a seafront café, overlooking the sandy beach at Garrucha. There were more clouds about today but only the high wispy ones; the sun shone through and it was lovely and warm in the sunshine.

Now, Tuesday may have been ‘Giving Tuesday’ and it may have been in its fourth year but what leaves me amazed is that this is the first year it has drifted into even the periphery of my attention. By profession I am a journalist, a news gatherer; how on earth does something like this slip past me?

Anyway, now I know that #GivingTuesday is a global day of giving that gains much of its impetus through the power of social media. Started in the USA, it is the Tuesday immediately following Thanksgiving and the two shopping events of Black Friday and Cyber Monday that are becoming more widely known in many other countries.

#GivingTuesday kicks off the charitable season, when many focus on their holiday and end-of-year giving. Since its inaugural year in 2012, #GivingTuesday has become a movement that celebrates and supports giving and philanthropy throughout the year.

So exactly what is #GivingTuesday?

Better late than never, I looked into this and found that it was created by 92nd Street Y – a cultural centre in New York City that aims to bring people together around the values of service and giving back. Apparently, it has been doing that since 1874 its efforts must be unsung as my wife Lisa, a native of New York City, has never heard of it.

Nevertheless, in four years #GivingTuesday has managed to connect diverse groups of individuals, communities and organisations around the world with the aim of celebrating and encouraging the act of giving. A team of influencers and founding partners, and there are some impressive names in those lists, joined forces to collaborate, offer expertise and work tirelessly – initially to launch #GivingTuesday and, since then, to continue to shape, grow and strengthen the movement.

Of course, ‘giving’ is a term that includes so much more than ‘donating’. Donations are gifts of money or other items but ‘giving’ includes not only these but also gift of time. Charities and other good causes would cease to exist if they did not have the support of volunteers who are willing to give their time and expertise to raise money or provide other valuable services.

There are volunteers who spend hours collecting clothes, bedding etc to send to trouble spots, there are those who organise lunch clubs for the elderly and needy, those who visit the sick and so on. There are so many more examples. They may or may not make donations too but they do give two of the most precious things of any human capacity – their time and their compassion.

In short, in any situation – whether charitable, personal or something else – the biggest and most important gift you can give is yourself.

 

Guide Dogs Week – still time for your support

guide dog

 

 

 

 

 

 

 

 

Guide Dogs are valued around the world. This one is working in Brazil.

GUIDE DOGS Week, halfway through

Service or assistance dogs, those wonderfully intelligent and friendly creatures, are known throughout the world for their dedication to their owners. They can be hearing dogs, guide dogs or provide another form of invaluable help.

Well, today (Wednesday) is the halfway point of Guide Dogs Week in the UK and it runs until the 11th. The Guide Dogs for the Blind charity is encouraging people to Stand Out for Guide Dogs, part of which is to take a photograph of yourself highlighted in neon paint. It is fun and looks impressive.

The charity says: “We will not rest until people who are blind or partially sighted can enjoy the same freedom of movement as everyone else.

“Every hour another person in the UK goes blind. We need your help to make sure that when someone loses their sight they don’t lose their freedom as well.”

During Guide Dogs Week you can help change more lives and create more partnerships. I urge you to do all that you can to help this great cause.

Many years ago, I was a member of a young men’s service organisation called Round Table. Our chosen charity that year was the Guide Dogs and through effort and determination we raised enough to pay for the training of a dog.

A few years later, I found myself volunteering as an adult leader in the Scouts. Our cub pack was raising money for the same charity and was successful enough to be able to choose a name for a dog. We held our meetings in the church hall, so we named her after the saint of the church.

In the last couple of weeks, twice these fantastic animals have caused me to think of their bravery and commitment to the task they have been expertly trained to carry out.

The first was an incident in which a taxi driver reversed his vehicle onto a pavement (sidewalk in the US) and into a young, newly trained guide dog and her owner. The fact that the pavement was in use seemed not to bother him and the car did not stop until the blind man realised what was happening and tapped on it with his cane.

Police were called but no action is being taken against the driver who has said he is going to claim damages from the blind person for denting the taxi. That is ridiculous, isn’t it? Luckily, the dog only suffered bruising but we don’t yet know if her training will be enough to overcome the shock of the incident.

The second dog is Lara, a yellow Labrador. After just four years’ service, she has been found to be suffering from a birth defect that could not be discovered at an early stage and so she needs help. Her female owner decided to retire her in March this year and, speaking to her just the other day, I asked when she can get a new guide dog. I thought that she would have a new guide living alongside the retired one.

lara2In fact, she won’t have another guide dog while Lara is still with her. Her words brought tears to my eyes.

“My mobility had to come second to her needs.. I am waiting until Lara is no longer with us, wouldn’t be fair, she has a lot of needs so she has to come first.

“I wouldn’t have had it any other way, she took care of me for nearly four years, kept me safe. Now it’s my turn to take care of her and give her the best life I can with the huge restrictions she has. Sadly her working life was very short, she was an amazing guide dog, so intelligent she qualified early, best in her year. She’s a very spoilt lady now!”

And repaying Lara’s dedication and service with such love means that this woman is once again getting about using a white cane.

Such a two-way bond of love and trust is just beyond words.

 

Retired Guide Dog Lara enjoying the sofa.

 

  • You can find Lara’s owner on Twitter @barefoot&paws

 

 

 

 

North Wales MS charity set for year ahead

Future plans and activities for MS Synergy were decided by members at the annual general meeting held alongside its September monthly gathering earlier this week.

MS Synergy is North Wales’s own independent support group charity for people with multiple sclerosis and those affected by it, such as relatives, carers, friends or anyone with any kind of interest in the illness.

At the AGM, held at Prestatyn’s Paanshee Bangladeshi Restaurant on Tuesday 15th, members approved the annual report, adopted the accounts and took important decisions about future administration and organisation. These were finalised by making some minor amendments to the constitution.

After two years as chairman, Nigel Partington had already forewarned us that he had decided it was best for him to stand down. Naturally, everyone was sorry his health had prompted that decision and sent him their best wishes along with their hopes that he would attend future gatherings whenever he felt able.Kathy Ruane

In his place, the group was fortunate to be able to elect two Co-Chairmen. These are Christine Cooper  (below) and Kathleen Ruane (right). Kathy has MS and if her surname sounds familiar, that is probably because her brother is Chris Ruane, former Labour MP for Vale of Clwyd. He served as MP for 18 years before losing his seat at this year’s general election.christine cooper_edited

The role of secretary proved to be a little more difficult to fill but was resolved with the help of some lateral thinking and ingenuity. I have been secretary for the last two years but moving to Spain in November meant that MS Synergy needed a new secretary – or did it?

With no-one putting themselves forward, the meeting decided to re-elect me (below left) as secretary to do from Spain everything that I had always done on computer in Colwyn Bay. Let’s face it, that can be done anywhere in the world with access to the internet. The one important part of the work that needs a hands-on presence in North Wales, the organisationian gravatar_edited of the monthly meetings or ‘gatherings’, was given to another committee member.

Former long-term group organiser and, for the past two years, gwawr_editedtreasurer, Gwawr Jones (below centre), was re-elected to look after the finances while Eryl Thomas (below right) Eryl Thomas_editedjoined the committee as Gatherings Coordinator.

Three remaining committee member roles were left unfilled, allowing the committee to co-opt people in the future.

With me going to be many miles away, members agreed that future general meetings and committee meetings should include a free computer-to-computer video link to make it possible and feasible for me to take an active part and to take minutes. Isn’t modern computer technology wonderful?

One last piece of re-organisation agreed by the AGM was in regard to bank payments and withdrawals. The previous constitutional requirement was for each cheque to bear two signatures from any of the three officers. An amendment passed on the night now requires two signatures from any of the officers and committee members resident in the UK. That will make the treasurer’s work a lot easier.

  • MS Synergy is a ‘local small charity’ as defined by the Charities Act. As such, it is only allowed to raise up to £5,000 a year.

 

 

 

Charity event in August, seaside resort in UK = clouds and rain

Just got back home from taking part in our last sponsored fundraising event before we move to Spain. Not the last event, just the last sponsored one.

This morning MS Synergy held its ‘wheel and walk’ on Llandudno promenade and the good news is that there was a pretty good turnout of walkers as well as those of us unable to walk very far and being pushed in wheelchairs. The number taking part this year was more than four times greater than last year.

Apart from raising money through sponsorship, we also took the opportunity to accept donations from people we met on the prom. I will let you know how much we raised as soon as I know.

Talking of a walk on the prom in a seaside resort town in August, it would be reasonable for you to think that we would have been blessed with sunshine and blue skies – but, sadly, this was not the case.

As is usual in the UK, the morning was heavily overcast but at least it was not windy. However, it did start to rain just as we were finishing.

The British weather was, in fact, the major factor in Lisa’s and my decision to move to Spain.

We are so fed up with rain, rain and more rain with only a rare appearance of any sunshine that we are moving to a place that has sunshine for at least 300 days a year. As for rain, where we are going, December is one of the wettest months of the year when rainfall averages just over 35 mm. And that works out at just over one mm a day. Colwyn Bay, on the other hand, has nearly 131mm in December while even its driest month, June, has almost 53mm. (All figures taken from World Weather Online statistics publicly available on the internet).

I think that the differences speak for themselves.

Although we are heading for the sun, rest assured that we are not doing so without regard to our health. We are both conscious of the damage UV can do to our skin and are fully prepared to take every precaution. Lisa, whose blood is half Sicilian, has a Mediterranean skin and she is used to the sun as, before coming to the UK, she had lived in Florida for 18 years.

By contrast, I am fair-skinned and burn more easily than I tan so sunblock will need to play a major part in my life. That goes for insect repellent as well because I was bitten a few times when Lisa and I visited the area in May but then I was not wearing any repellent.

You live and learn.