Miles for Miracles

This article first appeared in The Information Point newsletter Our World in 2018.

Earlier this year Will Ward celebrated his 15th year as a part of the Boston Children’s Hospital Miles for Miracles program, which partners runners with hospital patients.

Miles for Miracles montage

The Miles for Miracles program aims to form an inseparable bond between runners and patients, with runners looking to the patient they are paired with as inspiration and motivation while training for their race. Matches are encouraged to communicate frequently and even get together – patient families share their experience with the hospital while runners share their training updates.

This year, Will’s partner Kate McQuade Maul, ran her 18th Boston Marathon and it was her 16th running for Boston Children’s Hospital. Kate says ‘I have run the Boston Marathon since 2006 in honor of Will Ward and in memory of Steve Burton with the Miles for Miracles Children’s Hospital Boston Marathon Team. 100% of the funds I raise will go to support research for treatments and a cure for congenital myopathies at Beggs Lab at Boston’s Children’s Hospital. They have had some amazing breakthroughs recently. This past year Dr. Beggs was able to conduct research to support an ongoing clinical trial to treat MTM. Every dollar helps support this important research.’

This year saw the worst Marathon Monday weather in history, but the Ward family still turned out to show their support and the Miles for Miracles team Boston raised more than $2.3 million in total for the hospital.

Further information

London Hope Walk 2018

2018 was the tenth anniversary year of the Myotubular Trust London Hope Walk. The walk took place on Saturday 12 May and for the second year took in 10 of London’s iconic bridges, starting at London Bridge and finishing at Battersea Park.

London 10k map

The tenth year of the walk was very special and saw a great turnout with supporters old and new and a lot of families represented. This year 70 people took part and between us we added another 720km on the Hope Walk mile-ometer.

London 10k

Charity of the Year 2017

This article first appeared in the Information Point newsletter Our World in 2018.

When Christie & Co and Christie Finance decided to support a single ‘Charity of the Year’ in 2017, it was the first time that the company had focused its annual fundraising activity to a single cause.

The Myotubular Trust was a natural choice as Simon Hughes (whose son Zak has X-linked MTM) has worked for Christie & Co since 1987 so there was a strong personal connection. Simon’s colleagues at Christie & Co and Christie Finance had followed Zak’s 22 year journey since birth, also generously supporting the Myotubular Trust after it was founded in 2006 and regularly sponsoring the Myotubular Trust t-shirts.

Zak and Simon

Simon told The Information Point, ‘The idea was to raise as much money as possible over the course of the year by encouraging staff across the 16 UK offices to organise local fundraising events and despite most of them never having heard of myotubular and centronuclear myopathy, the initiative was immediately embraced by all. The profile of the ‘Charity of the Year’ was kept high throughout the year through regular email updates, articles in the company newsletters and mentions at internal meetings and conferences. Clients got on board too and were only too happy to support the fundraising events.

Christie and Co fundraising

We had walkers, runners, cake makers, raffles, dress down days and a variety of other things which in total raised well over £35,000. From the Company’s point of view, not only was it good to help fund the valuable work of the Trust but there was a real sense of teamwork in the successful completion of the various events.

My colleagues remarked how nice it was to fundraise for a charity where you could see a direct impact and difference being made with the money they raised’.

Christie and Co fundraising

David Rugg, Chairman of Christie & Co said ‘I am really proud of what our colleagues have done and are doing. Focusing our fundraising efforts for Myotubular Trust this year has unified the whole company, we are working successfully together in teams for a common, hugely deserving and worthwhile cause, which brings out the best in everyone.’

Further information

Learn more on the Myotubular Trust website.

BBC Radio 4 charity appeal

In 2017 the Myotubular Trust featured as a BBC Radio 4 Charity appeal. They told The Information Point about the appeal and why it was so important.

The Myotubular Trust were delighted to be featured as a BBC Radio 4 Charity Appeal on 29 October and again on 2 November.

The appeal was established in 1923 by Lord Reith, the first Director General with the first appeal airing on 17 February 1923, three months after broadcasting began. when an appeal was made for the Winter Distress League, a charity representing homeless veterans of the First World War, which raised £26 6s 6d.

 Nicholas Farrell

The appeal was presented by Nicholas Farrell, a British screen and stage actor who appeared in the Oscar winning film Chariots of Fire and can be heard on the BBC website.

Nicholas has been a good friend and supporter of the Myotubular Trust since he read at a Myotubular Trust Christmas Concert where he met Duncan and learned about his twin children, Will, born with myotubular myopathy and Isla, born a healthy girl. Very sadly, Will died just before his third birthday, from complications from a simple cold. Although his sister Isla is unaffected, she could be a carrier of the faulty gene causing myotubular myopathy, with the risk of passing it on to her own children.

Will and Isla

‘Given its rarity, the condition attracts no public awareness or funding – all money raised by the Myotubular Trust has come from affected families, their friends and supporters, so hearing the appeal on the BBC airwaves was surreal – clearly we knew it was coming but have lived in this world of an ultra rare condition for many years now and acclimatised to it being a grassroots effort. Hearing it described, even in the few minutes allowed in the script, on Radio 4 airwaves was a bit of an out of body experience.’ – Anne Lennox

The Myotubular Trust would like to thank everyone who listened to the BBC Radio 4 Appeal for their support and especially Duncan and Claudia Collins, Will and Isla’s parents, for generously sharing their story.

Shave or save

In 2017 Mark Ward, one of the directors of MTM-CNM Family Connection Inc, told The Information Point about a rather ‘hairy’ fundraising campaign he was conducting for the 2017 MTM-CNM Family Conference. Inspired by his son Will’s strength and toughness following an 11 hour spinal surgery, Mark began growing out his beard and created a series of photos asking contributors to vote for him to ‘Shave’ or ‘Save’ it.

Mark and Will

I guess it started back in October of 2014 when my son Will was in the ICU of Boston Children’s Hospital following spinal surgery. One of the consequences of Will’s myotubular myopathy is that his muscles are too weak to keep his bones straight, so over the years he had developed pretty severe scoliosis (curvature of the spine). He wore a back brace for years, which slowed the progression, but even with that his spine ended up with a 90 degree bend. So this surgery straightened things out quite a bit with the help of lots of titanium rods and screws.

Shave or save image

And that’s a pretty darn thought provoking life event – to see your child going through something like that. The kid is tough. His muscles might be so weak that he relies on a ventilator to breathe and a wheelchair to get around, but he is tough. Anyway, somewhere during that week, something inside me said ‘grow it out’. Now that I look back, it really makes no sense. Perhaps it was the hospital induced sleep deprivation, perhaps it was just thinking about life differently overall. But whatever it was, I embarked upon the shaggy road I am today.

shave-or-save-2

So, now I am putting my beard’s future to a a vote. One dollar = one vote and the more dollars you donate, the more votes you will get and you will be doing an awesome thing by helping to make the 2017 MTM-CNM Family Conference a success. But you will also have an opportunity to change my follicular destiny. Just comment ‘Shave’ or ‘Save’ when submitting your donation. (Votes have been coming in on both sides, but the majority have given their vote to my wife Erin as proxy – she’s voting to #savethebeard, at least for now).

shave-or-save-3shave-or-save-4

Easyfundraising

The Myotubular Trust Easyfundraising eStore raises funds for the charity everytime a purchase is made there. There are a wealth of shops to be found there, all of who make a donation, anytime you shop using the eStore link, at no cost to the customer. You can also raise commission if you are looking to say change your credit card, switch your energy provider or renew insurance.

On this page you will find stories from some of the stores supporters and if you would like to support the Myotubular Trust when shopping online too you can visit the eStore below.

Mike and Diane

Mike and Diane have been shopping online to raise funds to raise funds for the Myotubular Trust for many years now.  Mike regularly uses Amazon for buying cds and dvds, computer and electrical equipment such as computer components and has made larger purchases such as a video recorder and a television this way.

Diane shops at Marks and Spencer and has purchased concert and theatre tickets from Ticketmaster for concerts such as Michael Ball, Barry Manilow, Take That and musicals in Liverpool and Manchester.

Mike and Diane

Wendy

I signed up with Easyfundraising a while ago to help benefit the Myotubular Trust as my son Zak is diagnosed with myotubular myopathy – but sometimes I forget that there is this really good online shopping facility where a little bit of my usual spend will be donated to a charity that is close to my heart.

I admit, a couple of times I have clicked straight through to the retailer, forgetting that if I get to them through easyfundraising it will automatically collect a small percentage of what I’m spending and donate it to Myotubular Trust. So now I have a large yellow post-it note stuck on my home screen to remind me to do it every time I online shop (alternatively, you can download the donation reminder which will remind you if a shop gives donations, so no need for a post-it note).

The Hughes family

Easyfundraising seems even better and easier to use than ever: it remembers who I am when I visit and there seems to be loads more high profile shops and retailers now signed up to make a donation to the Myotubular Trust whenever you spend with them. What I hadn’t realised is that there are travel companies signed up too – so I can make hotel and holiday bookings through these and benefit the Myotubular Trust.

The biggest plus for me about using this way to shop is that it feels so good knowing that I’m also helping Zak and others with myotubular and centronuclear myopathy – all out of the retailer’s profits. Knowing this has also helped me change my shopping habits too – choosing online buying if I don’t need things in a rush. So more often now, I will browse for things in the shops, take photos of the product label, have a little think about if they will suit/fit, etc and then buy them through this online facility.

I’ve recently asked my husband’s employers if they would be willing to make all their office purchases and travel/hotel purchases through Easyfundraising too. The good news is that they came straight back saying that they would be ‘very happy to’.  I didn’t feel guilty asking, as it’s not costing them anything more than they would already be spending on travel, etc.

If you aren’t already signed up – I would love it if you too could consider online shopping this way? If we all collectively remember to shop through Easyfundraising, just imagine how much we can raise to help our community … and all for the sake of remembering to make just one extra click on the computer. I hope you can discover a few bargains along the way too. Happy shopping and fundraising!

Toni

I love to shop, whether it be a gift for someone or a treat for me and I love Easyfundraising, shopping there regularly now for all sorts of things.

For those of you who don’t know, Easyfundraising is like a giant shopping centre … think the Trafford Centre in Manchester, Westfields in London or Liverpool One but online. However, unlike a regular shopping centre, all the shops within this shopping centre give a donation to the Myotubular Trust, whenever a purchase is made with them.

It isn’t complicated in the slightest … here’s the science bit. All you have to do to ensure your shopping generates a donation for the Myotubular Trust is visit the Myotubular Trust Easyfundraising cause page. Search for the retailer you want to shop with and you will be taken to a page which tells you what percentage of your purchase the retailer will donate when you shop with them. Click the ‘go shopping and raise funds button’ and hey presto you’re done. Your shopping will now result in a donation for the Myotubular Trust.

There are over 3,000 retailers to choose from and I now check Easyfundraising before I buy anything at all, as I love the special feeling I get on finding that my purchase will benefit the Myotubular Trust. Donations can vary from pennies to pounds … sometimes many pounds, say if you are booking a holiday, renewing your house insurance or switching your energy provider.

Toni

High street shops such as Marks and Spencer, Debenhams, Dorothy Perkins, Argos, Top Shop, Lakeland, Next and so many more can be found on Easyfundraising. Toiletries and makeup can be purchased from Boots and Superdrug. There are a number of book shops on Easyfundraising – I have used both Amazon and Waterstones but my current favourite is Book Depository as they don’t charge postage. I use Amazon when downloading music and if I want something a bit special I visit Not on the High Street.

And it is not only online that I am able to help as I have registered for in store donations too. Cafe Nero are one of the shops who pay a donation when people shop in store, so each time I buy a coffee on my way to work, I am able to help the Myotubular Trust too. If you shop at Officer’s Club or Blue Inc they give in store donations also.

So because both my dad and me are diagnosed with centronuclear myopathy and because I think it is very unlikely that I will ever take part in a fundraising event which sees me running a marathon or a 10k, climbing a very high mountain or swimming a very large sea, I think shopping with easyfundraising is a lovely way for me to help a cause so very close to my heart and when I see the donations mounting up, it makes me want to do it all the more. If you haven’t tried it and you or someone you know is affected by centronuclear or myotubular myopathy, I would urge you to try it too. The pennies raised quickly make pounds and many pounds equal research … and maybe one day a treatment or a cure for centronuclear and myotubular myopathy.

Anne

The Easyfundraising eStore for commission based charity shopping is a great initiative, and I love how easy it all is.

When our son Tom was alive, internet shopping was absolutely the only way I kept up with birthdays and Christmas as we never really got out to any big shops. Even if Tom was strong enough to go out, I only ever wanted to take him to places he would love like the park and playgrounds and friends’ houses – like all little boys he really wasn’t too keen on shops!

Since Tom died it has been very important to me to do everything we can to continue to fundraise for research into this condition – hence I spend all my spare hours working for the Myotubular Trust. It’s a busy but very rewarding time in our family’s life, and in our sadness at Tom’s absence we all know we’re doing something that makes a difference.

However I am always careful to make sure each of the children is just as important, and no matter how heartbroken or busy we’ve been over the years Christmas and each child’s birthday is a very special time. How great therefore to know that even when I’m buying presents it still makes a difference!

I know only too well how important every penny is to research, so it is immensely gratifying to click on those links, look after my living children’s Christmas, with one eye on the research that will give a future to other boys like their brother Tom.

Brewing for Beggs

 

Erin and Mark Ward’s son Will is diagnosed with myotubular myopathy. In 2016 they told The Information Point about the fundraising event ‘Brewing for Beggs’ which raised money for the Beggs Laboratory Congenital Myopathy Research Fund at Boston Children’s Hospital. 

Brewing for Beggs.

For the past 11 years, our son Will has partnered with Boston Marathon runner Kate Maul, in the Miles for Miracles program through Boston Children’s Hospital. For several years, Kate, her husband Tim Maul and fellow marathon runner and friend, Gretchen Wilson, have specifically designated their marathon fundraising to the Beggs Lab in honor of Will.

This year, they held their second special fundraising event called ‘Brewing for Beggs’ which took place on April 3 2016 at Hopsters in Newton, MA. Guests that attended got to experience making their own brew, drinking some brew and learning about the important work happening at the Beggs Lab. Dr. Alan Beggs and Casie Genetti, of the Beggs Lab, attended the event. It was a fantastic event for a great cause.

Left to right: Gretchen Wilson, Kate Maul, Alan Beggs, Casie Genetti and Will Ward.

Through this event and additional fundraising, Kate, Gretchen, and Tim, all ran the 2016 Boston Marathon and collectively raised over $10,000 towards the Congenital Myopathy Research Fund for the Beggs Lab. We are grateful for their efforts for the MTM-CNM community on behalf of their partnership with Will.

Further information

Dublin marathon

This story first appeared in the Information Point newsletter Our World in 2012 when Wayne Fitzgerald told us about running the Dublin marathon for his friends Marie and John, to raise funds for The Myotubular Trust. 

Marie and John Loughlin live in Galway, Ireland and have lost four sons to Myotubular Myopathy. Earlier this year their friend Wayne Fitzgerald decided to run the Dublin Marathon to raise funds for the Myotubular Trust. Below Wayne writes about training and what it meant to take part in the event.

Training for this marathon began some time back, when the idea of completing it was planted in my head by a friend who also wanted to run it but decided prior to our planned start date against the idea. I on the other hand felt as I had asked a friend to design a running programme for me, that I would continue with the plan.

As a member of the Irish Defence Forces I have always kept a certain level of fitness. Prior to training for the marathon I tried to complete three weight training sessions and two to three runs a week. Once the marathon training kicked in on July 4th I stopped training with weights and concentrated almost solely on running. The very rare time I did a weights session it was to complement my running by concentrating on leg muscles exercises with light weights.

My first run on July 4th was a four mile run leading up to eight miles on the first Sunday of a sixteen week programme. Each week was different with regards to distance and types of run. These varied from three miles ‘Hard’, to hill sessions, interval training, fartlek and of course endurance runs with the shortest been eight and the longest pre marathon run of twenty two miles. During these runs I would rehearse my eating and drinking planned for the marathon day. By doing this I learned what foods I could eat without fear of my body rejecting them on the day. It also afforded me an opportunity to gauge at what stage I would suffer most and how to minimise this effect. I found later in the training programme, towards weeks 12 – 16 , that using ice baths and very often the sea is a brilliant form of recovery. After long endurance runs or the end of a tough week, ten minutes in the Atlantic Ocean, while often freezing, aided my recovery substantially. I also had three physiotherapy sessions during the training that ensured I was in perfect shape for the marathon.

The prospect of running for X Linked myotubular myopathy entered my mind long before I approached John and Marie and asked for their permission. I, like many of their friends was aware of the illness and the pain it had caused to them and their families. John and Marie have always been very open about their sons and are willing to speak of the illness. The fear for me was I was afraid of upsetting them or opening old wounds. Then one day at work, a friend asked me was I running the marathon for any group. I replied no and he said ‘why don’t you run it for Locky’s boys’. So I went to John (aka Locky) and asked him was it ok for me to do it. John of course being the type of man he is, answered absolutely.

With John and Marie on board, the training, despite entering a tough phase now had a real purpose, something greater than running a marathon. We as one, were going to spread awareness of this illness. Plus for me, when the endurance runs got tough, I had added motivation to complete them.

As part of our plan, we raised sponsorship for X Linked myotubular myopathy but the greatest result we got from this was people asking ‘what’s that’. The run provided us with a platform to educate people and spread awareness of this illness. It was an opportunity to spread word of websites, contact groups and other people who had been through this and could offer support to people in the event it occurred in their home.

After 16 weeks of training, the day of the marathon had finally arrived. Standing at the start line waiting to go, a number of emotions ran through me. I was partly relieved to be standing there, proud to be running for the little men watching over me, nervous about the challenge ahead and apprehensive about the run.

My wife Lisa, who supported me all the way through the training, putting up with me coming in the door from work just to change into running gear and go back out the door, leaving training gear dotted round the house and my general absence, had traveled to Dublin with my girls Alayna and Emma to support me. I thought about them a lot on the start line and how lucky I am to have them and how grateful I am to them for being a source of motivation.

As the race began I ran at my pace. People have often got caught up in the moment and take off too fast causing severe problems later in the race. I found however by running some shorter races during my training; ignoring all the other runners and running as I had trained, that I felt strong as I passed each mile marker until around 23 or slightly after. By 20 I had hit my wall and began to feel tired. As I passed runners and others passed me, I noticed various groups and charities on the runner singlet’s and tshirts so I thought a lot about X Linked myotubular myopathy and John and Marie’s little boys.

By the time I had reached 25 miles I was really feeling pain and it was around then the race came back into Dublin City. I knew then not only would I finish the marathon but would do so under my planned time, without walking one step and would have helped raise awareness of X Linked myotubular myopathy. I thought of John and Marie’s’ little boys at this point and whispered thanks to them for watching over during the race.

Finishing the marathon while though a nice feeling, was never about me as an individual, it was about continuing through barriers to achieve a goal. Often in life there will be no goal, no end state but somewhere along the line a difference will have been made and that is what we did as a team by running the Dublin City marathon and raising awareness for X Linked myotubular myopathy.

Working at The Myotubular Trust

This story first appeared in the Information Point newsletter Our World in 2012 when Mel Spring, the Communications and Education Officer at the Myotubular Trust, told us about her work and what led her to take up the role. 

Mel's son Jack with Tom Lennox. Jack had his blue cast changed to pink to raise money for the Myotubular Trust.

3rd November 2008 – my first day. Nervous doesn’t even come close to how I felt despite the fact that myotubular myopathy was not new to me. My background was 17 years in banking followed by a few years in a secondary school – this was very, very different.

My journey with myotubular myopathy began on 21 July 2003 when Tom Lennox came in to the world; the first son of my dearest friends Anne and Andrew. On the sidelines, watching the tests and diagnosis slowly unfold, watching those I hold so dear hoping and loving in a way which I’d never before witnessed.

That particular journey sadly came to a close on 29 May 2007 – a day which I shall never forget and a day which I remember oh so vividly every time we hear the heartbreaking news that another life has been lost to this cruel and devastating condition.

Sat at a kitchen table with a mountain of documents about myotubular and centronuclear myopathy surrounding me, as I started to read, it hit me just how much Anne and Wendy had achieved in just 2 years; each working in their own homes, many miles apart and both managing their own personal challenges. It was almost impossible to comprehend that they could have done this given their circumstances. I was, and am, still in total admiration of them both and consider myself very lucky to work with, and alongside, such inspirational ladies.

Within days I was ready to send an email to introduce myself and explain my new role. The welcome from family supporters was so warm you could have toasted marshmallows on it and the warmth and the number of people with whom I have the privilege to be in contact with continues to grow. I now have so many new friends.

To say that my role is diverse is something of an understatement. In any one day I can be posting wristbands, doing book keeping, climbing in the loft to stock take t-shirts, supporting a fundraiser with an event and sending information to a family which has just received a diagnosis. My home, where I work, is full of t-shirts, collection boxes, Christmas cards and files but whilst I sometimes curse when I stub my toes yet again on the boxes at the bottom of the stairs, I count my blessings daily.

I count my blessings because I am in contact, almost daily, with people who inspire me beyond words. This is the most humbling of jobs; children collecting their coppers to donate in memory of a lost friend; journeys from so far away to support an event; excruciating personal challenges; people forsaking gifts when celebrating very special personal occasions; and so heartbreaking – the news of the loss of a warrior.

It’s fair to say that so often the tears flow for the loss of somebody you’ve grown to know so well; there are so few affected by the condition that those who lose their fight are more than just a name on an email – they are people who we have grown very close to, know so much about and care for. I can spend hours trying to find the words to say just how truly sorry I am each time such sad news comes our way – it will never get easier and I guess the day it does is the day when I resign.

There are days when you are so emotionally drained by tragic news or by attending the fundraising events that remind us time after time why we have come together, that it would be easier to walk away than to carry on. But, the strength and the love that I have witnessed in each and every family and adult living with the condition that I have had the joy to know, and sometimes meet, provide such motivation and strength and for that I thank you all. Whatever your personal journeys, you all amaze me – I thank you all for allowing me to share some part of your journey.