Muscle Owl Magazine: Issue 1, Aug-Sep 2015

Letter from the editorFirstly, thank you for turning the page. The MuscleOwl has been on a long journey, from a Twitter feedthrough the audio waves and onwards; togetherwe can push it further still. Maybe this is our firstencounter, maybe you’re a seasoned listener, but I feelit appropriate to begin this issue by outlining our keyobjectives and highlight why we do what we do.Disability is still not a norm in our society. If possibleit is avoided, where not, it is often gazed upon in a fairly saccharine light. For me andmy co-hosts, however, disability is simply ‘being different’ - nothing else. Nothing toshy away from, and certainly nothing to fear.Nevertheless, we remain firm too, in our focus to support a healthier and pioneeringsociety; one where treatments and cures are funded and given every opportunity toflourish.This is our duality: normalisation of disability, alongside the empowerment of medicalinnovation.This magazine will act as an additional outlet, to feature our material through theprevious month, and look ahead to the next. On the airwaves, through the socialspheres, we are all in this together; joining the fight for a better and a fairer society.So thanks for coming along,PeterContentsCommunity Calendar | 3 - 4Michaela: The SMA Diaries | 5Martin Hywood: Blog Excerpt | 5 - 6Podcasts & Video Section | 7 - 9Sulaiman: Why Not People? | 10Tweets of the month | 112

Fundraising CalendarLight it up Green August 2015August’s Big EventsThrough the hard work of Floridian mother and campaigner, Nadine Kirby, 47States of America have declared August Muscular Dystrophy Awareness Month.Nadine’s son, David, is 23 years old and has Duchenne musculardystrophy.This year the Jupiter Lighthouse, the Miami Tower and SeattleGreat Wheel have joined togetherto light up their landmarks limegreen to spread awareness ofmuscular dystrophy and relatedNeuromuscular conditions.The organisation will be meeting upon August 20th 2015 to celebratethe first annual lighting of the JupiterLighthouse from 6pm and the eventwill feature auctions, games andT-shirt sales. Even proceeds from the sale of Mako vodkawill be donated to Light it up Green!Here at the Muscle Owl, we’ll be turning the owl green onAugust 20th. So if you’d like to show support and solidarity,tweet @LightitupGreen on Twitter!Martin’s Move a Mile for Muscles August 31st 2015Martin Hywood, who has Limb Girdle muscular dystrophy,will be undertaking yet another of Move a Mile for Musclesevent for the third consecutive year. Bigger than everbefore, his 2015 Move a Mile for Muscles will feature twentyfive of his closest friends and fundraisers, each running amile in relay, and will host a range of live music throughoutthe day. Having raised thousands for Muscular DystrophyUK in previous years, he has again set the stakes high witha fundraising target of £6000 for this year’s event.If you’d like to support, follow his tweets @hywoodmartin,or see www.justgiving.com/Martin-Hywood2.3

Joining Jack’s Wigan 10kJoining Jack’s flagship fundraising event is nowin its third year and takes place on Sunday 6thSeptember. This year they have their sights seton 3,500 runners.You can sign up via their website.Great North RunThe world’s biggest half marathon has alwaysbeen a huge event for Muscular Dystrophy UK.This year they’re urging runners to turn the Tyneorange as part of #TeamOrange!Make sure you cheer them on @MDUK_News!All Party Parliamentary GroupAPPG for Muscular Dystrophy meeting onaccessible housing and adaptations for peoplewith muscle-wasting conditions.3pm to 4:30pm, Committee Room 18, Houses ofParliament. Hosted by MDUK.Alex’s Wish Charity Golf DayAlex’s Wish are holding their charity golf day forthe 5th consecutive year.Starting with coffee and bacon rolls, 18 holesof golf await, with a shotgun start and 4 ballStapleford; evening meal is a hot buffet.Muscular Dystrophy UK National ConferenceMDUK’s 2015 National Conference & AGM will be held at HolidayInn London Kensington Forum, 9:30am to 4:30pmThe move in venue will deliberately collidewith the World Muscle Conference, giving theopportunity to hear the latest in research fromworld-renowned researchers.4

The SMA DiariesWe all celebrate different awareness months. Each August, Michaelaand others internationally celebrate SMA Awareness Month. So she’sbeen keeping a diary, looking specifically at ‘differences’...To begin, I wanted to make clear what the initials for SMA muscular dystrophy actuallystand for: Super Magical Aberrant. We are all aberrant. All that truly matters is that wefind the magic in that. And then it all has the potential to be super!The second day into the month was my nephew Kian’s birthday. SMA has undoubtedlyinfluenced his 10 years and I like to think it has shaped him positively. He’s openminded and witty - executing an amazing Stephen Hawking impersonation - and ishonestly one of the youngest people I know, with the biggest, most open attitudes.Kian lives with me, and SMA is as much a part of his life as it is mine. Difference is secondnature to him. If someone stares in public he’ll eyeball them,hug me, tell me to watch out for ‘ableists’ and then pester meto buy him something. SMA isn’t always horrible: Kian hasshown how it can be made fun.The fourth day of SMA Awareness month marked the first timein three weeks that I was able to go most of the day on onestrong dose of codeine and one dose of paracetamol. WhatSMA has brought me - and my immediate family - is a deepunderstanding of medications. Just check out my medicationcloset. From antibiotics to pain relief to some anti-sicknessdrugs which are usually used alongside chemotherapy,they’re all in that cupboard. But these are drugs which havegot us through many situations. It’s often a source of laughter when mum tries to saythe long generic name of a drug as opposed to brand names. It’s equally a source oflaughter when I’m asking for “any pain killer you’ve got!” andmy sisters start singing “Any Painkiller Will Do” to the tune ofJoseph’s Magical Dreamcoat.I’m so often reminded why I devote so much time to MuscularDystrophy UK: they’re looking for treatments and cures, butthey also push for society to stop disabling me and makeattitudes better - and that in itself no longer disables me.Every second I spend with people like those at MDUK andMuscle Owl is worth a million years, because I’m lucky to havespent today in such a wonderful environment. More peopledeserve that chance. I will always be a wheelchair user, anda woman with SMA. The only thing that actually makes medisabled is society.5

On The Cusp of Something GreatOn 30th August, Martin Hywood (who has limb-girdle muscular dystrophy) will behosting a Miles for Muscles event, which will see him and 25 friends walk or run a mile forMuscular Dystrophy UK. Here he looks ahead...Lately I’ve been asking people questions and have posted subsequent participantprofiles online. I’ve been so impressed with so many friends and family and I feel veryhumbled by some of the things that have been said. I just want people to know aboutthese conditions and try to help a little, that’s all.My wife, Michelle, is now even part of a running club and I couldn’t be prouder. I’vesaid already, it doesn’t matter how slow she runs: she’s faster than the Michelle fromone month ago!I must also emphasise how many people are travelling to do this and are not just fromaround the corner. One friend, Gray, will be joining us from Lancashire, and another,Jo, will be coming over from West Yorkshire — with family too!One friend, Mark, was so moved by the BBC Newsnight feature on Translarna that he haschallenged himself to run the full 26.2 milesaround Alylesbury, as if he was in Londondoing it with us. And moreover, adding anelement of fun and competitiveness, he’sgoing to ‘Race the Relay’! Who will be fastest- us or Mark?!?Mark will set off at 11:00am, and mydaughter, Lucie, will start our relay, so wewill hopefully finish near the same time!Usually the hardest part of any of my charityevents is asking people for donations andmoney. However the problem I have here isactually walking the full mile! I’ve been told6

not to worry, as we have a wheelbarrow ready to get me to the finish if needed. ThoughI won’t let that happen. I’m like the rest of you; I’m in training for a very special dayand it bloomin’ hurts! I’ll be trying to walk the last mile of this marathon and thoughit might not seem like much, it is when you can hardly walk at all! A great runner oncerecounted: ‘A challenge is a challenge because it’s relative to that person’.Donations and social sharing of our story would be greatly appreciated. We have seta target that equates to one fully funded week of research, and I think we can hit it.Just imagine if a scientist had a ‘eureka’ moment and that was partly financed bysomething we did together?“Remember that day in 2015 when we raised that cash and funded the research,which found that treatment? Fantastic, wasn’t it!”Video Sagas...As part of Peter’s‘Participant Profile’for Martin’s event, hesat down with fellowpodcast host and coeditor,Michaela, totalk about Miles forMuscles.Check out the videoon the left!Have you watched our Muscle Owl channel onYoutube? Seen some of our videos on Facebook?We’re looking to get Owl listeners and disabilitycampaigners better connected. So if you thinkyou’d like to take part in one of our videos, or evenan on air interview, get in touch!info@muscleowl.com7

MuscleMinutesHave you tuned in to our podcast lately? If not, here’s whatyou’ve missed!Episode 14: Translarna No - NHS England ShameAn emergency ten minute special episode as we discussedthe situation with Translarna and the path for families.“We’re definitely at a crossroads, andwe’re stuck in the middle of a hard battle”Michaela Hollywood.Episode 15: Michaela’s Miles for Muscles Marathon!Join us as we take a look back toMichaela’s ‘Miles for Muscles Marathon’which took place through the streets ofBelfast!We have clips from the day as wereminisce on some of our best moments.Episode 16: “Can you get out of that thing!?”Bus travel in IrelandWe are joined by our friend from radio,Vanessa Monaghan, who last week sawa young man in a wheelchair having aterrible time on a Dublin bus.Episode 17: Sulaiman’s Lecture in Covent Garden onDiversity in the Creative IndustriesIn what was the unpublished secondhalf of Michaela’s Marathon episode,we discuss a lecture Sulaiman made atthe Hospital Club in Covent Garden onDiversity in the Creative Industries.8

The August PodcastsEpisode 18: Hayley Lloyd, FundraiserSupreme!In ep18 we welcomed special guestHayley Lloyd onto the show.Hayley is a tireless fundraiser for MuscularDystrophy UK since her ten year old son,Tommy, was diagnosed with limb girdlemuscular dystrophy just two years ago.Here she tells us about her fundraisingescapades with George Gilbey ofGogglebox fame, along with all that’s tofollow for the rest of the year.Episode 19: Tommy’s BrilliantBean Day!Following on from the previousepisode, we spoke with Tommy abouthis Brilliant Bean Day fundraisingevent.Tommy is ten years old and has limbgirdle muscular dystrophy. As youmight have seen on social media,Tommy sat in a tub of baked beans forMuscular Dystrophy UK on 8th August,raising nearly £500.Released: 7th August 2015 Released: 8th August 2015Ep 20: Cystic Fibrosis (Part 1)Release Date: 21st August 2015Featuring: Peter Duffy, Michaela Hollywood, Andy WardEp 21: Navigating the Streets in a Wheelchair!Release Date: 26th August 2015Featuring: Peter Duffy, Michaela Hollywood, Sulaiman Khan9

Sulaiman: Why Not People?On 1st July, I was invited to attend the Why Not People Launchevent at Troxy. Founded by the lovely Jameela Jamil, its aim is toget disabled people integrated and participating in attending livemusic.Personally, I think this is a great idea. I’m a severely disabledwheelchair user myself and very active in society: I love going togigs, films, and creative/cultural events. Nevertheless, I find it really difficult bookingtickets as you usually can’t make disabled bookings online. This oftenleaves me feeling isolated at most venues and I’ll often have to sitin the ‘wheelchair chicken pen’ with no access to being a part of theaudience while enjoying the show.Currently there are a few good exceptions in music venues, such asthe Roundhouse, Wilton’s Music Hall, Rough Trade East and UnionChapel (four of my absolute favourite venues) that do an excellent jobcatering for disabled patrons. Their positive attitude towards disabledcustomers alone is something that many venues could learn from.So with that in mind, Why Not People certainly feels like a positive shift for disabledpeople to be a bigger part of society. As such, I very much look forwardto working together with Jameela Jamil and Why Not People to ensuredisabled people have a greater experience and access to gigs, as well asmaking sure that disabled people’s lives are improved as a result. After all,we have as much right as anyone else to go to a gig (feeling a part of theaudience) and have a good night out!10Muscular Dystrophy UK Trailblazers Manager Tanvi Vyasrecently acted as part of a 12 person panel on the newlyorganised National Wheelchair Leadership Alliance.The Alliance is leading on NHS England’s work to improvewheelchair services, aiming to raise the profile of the challenges that wheelchairusers face, ensuring access to wheelchairs and that wheelchair repairs are improved.Wheelchair users, MPs and CCGs are now encouraged to pledge their supportto the campaign by signing the charter which will help to bring about importantimprovements. A recent survey from MDUK suggests 70% of people wait more thanthree months for a wheelchair, while 30% face a delay of more than six months, anda further 15% of patients wait more than 12 months.For more information, and to sign, see: http://www.rightwheelchair.org.uk/The Trailblazers are also currently investigating transport. See here for info.

Tweets of the month11