Dear lovely readers,
In case you haven’t heard, our website got a makeover just before the new year! With this makeover came a new blog!
All new posts will be posted to www.muscle.ca/blog
Thank you for reading, and we look forward to bringing you more stories on the new blog!
I saw Lindsay Ell – an amazing performer from Calgary, Alberta – perform for the first time as one of the opening acts for The Band Perry in Oshawa, Ontario. As soon as she said the words, “muscular dystrophy,” I sat straight up. Having only been working at the National office of Muscular Dystrophy Canada for just over three months at the time, I knew most of the general public had either not heard of muscular dystrophy, or did not know what is was. But there Lindsay was, telling a sold out Oshawa Centre about her friend who is affected by muscular dystrophy.
Me, Lindsay, and my friend Tara
At the end of her set, Lindsay told the crowd that she would be doing a meet and greet – I knew I had to be there. I was second in line, and told her about how much I loved that song and that I worked for Muscular Dystrophy Canada and would love to share the song with all of you. Lindsay was so gracious, sweet and excited to have the opportunity to have you all hear the song and to tell you a little bit more about the meaning behind it. I had the opportunity to ask her some questions:
Q: Tell me about your friend.
A: A sweet friend of mine has muscular dystrophy and honestly has one of the most beautiful hearts I’ve ever met in my life. She is so honest, funny, generous, and is completely full of natural inner/outer beauty. She is one of my biggest supporters and fans of my music. I met her through friends of the music industry, and her passion for music is completely infectious. She is a constant reminder of how we take the little things in life for granted.
What did writing this song mean to you?
A: This song is really special to me, because I firmly believe regardless of who you are or what you’re doing in life, self confidence is such an important thing and a quality that is so easily damaged in a society like we have today. Especially with youth these days, there is so much pressure on them to act/look a certain way. So I really want this song to constantly be a reminder of how much you should value yourself and your self worth, knowing that regardless of what is thrown to you in life, that you can handle and deal with it.
What are your feelings towards being a part of your friend’s support group? What does being a member of a support group mean to you?
A: I am very proud to be a part of her support group, as I feel that everyone needs people they can count on in life. We all have good and bad days in the crazy lives we lead, and therefore surrounding yourself with individuals that can help you navigate through those tough times is crucial. I think that everyone in life needs to have those few select people that they keep close. One of my closest friends told me that you have your ‘postcard people.’ Those are 5 (or so) select people in life that you know you can count on to always be honest, be there for you, and have your back no matter what.
What do you hope people take away after listening to “Not Another Me?”
A: I hope that people take away a little glimpse of my personality and who I am from ‘Not Another Me.’ I hope that they can see my heart through the song, and see my passion for music and for ultimately wanting to help make a difference on a bigger level.
Watch Lindsay perform the song Not Another Me and explain the meaning behind it in Oslo, Norway:
To find out more about self-advocacy, click here.
Tell Lindsay how much you love the song on: Twitter, Facebook
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Maria Tassone is the Marketing and Communications Coordinator at the National office.
There are so many possibilities out there and I hope you are taking them. I hope you have recognized just how special you are and the power you have to become all you dream of becoming. Your life is all you have and it can be all that you want it to be. Work hard. Work harder than everyone else. Do not wait for tomorrow, do it now. Because sometimes, those days never come.
Understand that sometimes life gives you struggles. But you have the opportunity to grow from it. You must decide who you want to be and fight for all you can be. Be better today because of what happened yesterday. Make mistakes, have regrets, and learn from failure. Actually, fail all the time. Fail every day if you want. Just learn from it, grow past it, and do not let it steal you away. Love all your decisions, even if they turn out to be the biggest mistakes.
The scars you can never erase, the ones you try to hide sometimes- they are beautiful. You have lived. You have survived. It’s okay to stand out. I understand we all want to fit in, we all want to be accepted. But sometimes fate is a different story. Sometimes, it’s not for you to fit in. Do not be ashamed of that. Do not be ashamed of who you are. Don’t try and hide it. Embrace it.
Your stories are something I could defiantly learn from. Maybe perhaps even inspire me. & if you have the potential to inspire one person, you have the potential to inspire the world. Be a story worth telling. & tell it. Inspire me.
Your success, it does not lie all in what you have accomplished, but also what you have failed to do. You have been taught to be open and you have accepted challenges which have refined your skills, your being. Face your fears, prove yourself.
Always be kind. Your actions speak much louder than words. People deserve kindness. Do not waste your life being cold or trying to get ahead of everyone else. Do not waste time only helping yourself. I hope you find time to help others, and I hope they help you.
There is a reason behind every one you meet. Some will make you better, some will test you, and some will disappoint you. Do not take things personally. I have had people doubt me. Be the bigger person and do not give them your time of day. They don’t deserve it.
I hope you get lost. In who you are. I hope you do not get lost in expectations, in materialistic things, or hate.
Those difficult days, which are full of failure and disappointments, I hope you find patience. Know you always have a chance. Whatever it is you want, it’s not going to come easy. It’s going to challenge you. You have to prove yourself. Know that you could have a million reasons why something is impossible. But one reason why, is far greater than all the reasons why not.
I hope you feel blessed. In the good, the bad, and the ugly. You may not feel it all the time, trust me I understand, but take a moment and look around. There is something to be thankful for, always.
I hope you find happiness. Within yourself. I hope you stay true to yourself. Live your truth, the way you want to. Do not ever pretend to be something you are not. You have one life- only one. You won’t be given this chance ever again.
Even if you lose it all, even if the sky comes crashing down on you, I hope you find strength. I hope you do not let it defeat you. You are much stronger than your circumstances.
What I want most for you is a life full of lessons. I hope you live long enough to get wrinkles and I hope you live life to the fullest. I hope it is full of excitement. I hope in good days and in bad, you find a reason to smile. I hope you smile every chance you get. Nobody’s life is perfect and far from easy. You have the choice to be grateful for all that you have and all that you may never know or understand.
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Ivana was born in Sanski Most, Bosnia & Herzegovina, but moved to Canada at the age of three. She was diagnosed with LGMD a few years ago, and it has forever changed her life. She is a regular contributor, and her blogs will be everything she has learned along the way, and what she continues to learn today.
I remember the schoolyard at St. Michael’s,
named after the protector saint,
the sun burning the patchy grass,
the rusty soccer nets, the chain fence
the only thing protecting us
from the rest of the world.
I remember running around with my friends
chasing bugs, catching them, trapping them in jars,
torturing them.
Not once considering
my connection with something
so small and helpless.
I remember watching kids play soccer
laughing and running around carefree
in the rough grass,
wishing I was cool like them,
but I never joined in.
I remember the shade of the big oak tree
keeping me safe from the world,
embracing me the way a father would a son,
taking away all the pain
and healing him with warmth.
I also remember falling in the middle of the soccer field
twisting my legs on the uneven ground,
no one running on the field then,
left there alone and scared, crawling back
to the school like a lone worm.
To some of my friends the schoolyard
might already be forgotten
like gum on the bottom of a desk,
but it is scorched into me
like a burn scar.
It’s where I stopped walking.
It’s the place that first put me
in my mechanical and heartless
chamber, all steel
and painted grasshopper green –
my wheelchair,
my new legs.
‘St. Michael’s’ is a poem in Jake Slominski’s The Page They Forgot to Burn.
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Jake Slominski was born in Niagara on the Lake, and at age 5 was diagnosed with Duchenne Muscular Dystrophy. His work has appeared in the literary journal, Logos, and he recently studied poetry at Niagara College. Last year he won Honourable Mention in the Canadian Authors Association Poetry Contest and he had three poems selected for their anthology, The Saving Bannister. He is currently working on a collection of poems on the history of disability.
‘Bad things happen to good people.’ It’s a phrase I have heard dozens of times in my life. It’s also a phrase that I hoped would stay clear of my family, my friends, and myself. However, sometimes you can’t stay clear forever. This blog is quite the exact opposite of my last one, a total 360. The reason being, there is no way you could ever measure a happy life without sadness in the picture; happiness would lose its meaning.
Everyone tells you to think positive, and you will have a happier and healthier life. As children, we make lemonade, and are taught to see the glass have full. But, there are moments that can change everything. We learn at a young age to buckle our seatbelts, to wear a helmet, and look both ways before we cross the street. We do our best. But sometimes, it makes no difference. Bad things come… and they come out of nowhere. There is no warning. This past summer, my sister had a terrible accident, a close family friend, and aunt died, and I had an accident at work. It was just one hit after the other. I felt like I was getting the wind knocked out of me, while I was still on the ground struggling to pick myself up from the last hit. Usually when something bad happens that affects me, I shake it off. Pretend it’s not there and pay no attention to it. Would it do any good anyway? But, you do need to heal. You need to feel your feelings, things need to be said and you need to go through the whole process, whatever it may be. To allow yourself to heal, you need to be a victim for a moment. After that, you are what you choose to become.
My cards are folded. I cannot change them. I have to live with them. They are what make up my year, my life. But sometimes, I lose myself. Sometimes, I want to pick up those cards, and send them flying over a tall building. Sometimes, I wish I could restart. Give back the deck and get a new one. As much as I think I have had the worst of luck- I cannot think that way. My sister is still here with me, and both my aunt, and family friend are out of pain. As for me, I survived. My wounds will heal. There is still an inner voice within me, and even though sometimes it’s a soft whisper, it still reminds me that I am strong enough. That I can be more. This is when never losing hope plays a role. The little reminder that things can get better. Things do change and it is not always what it seems.
So when things get tough, understand that it’s okay to not have on that brave face. I think it’s okay to break down, scream, cry, question. Because it’s only when you lose everything, can you rebuild. The hard things that have happened in my life have made my voice a little louder. To this day, I know my sister did not deserve what happened to her. I do not think I deserved what happened to me. My aunt did not deserve to be in so much pain on the last few months of her life, nor did she deserve to lose her life to a battle she never asked to fight. Our family friend should have kept on smiling and spending time with the ones she loved most. My mind will never change on that. So why? I cannot change their cards, just as I cannot change mine.
All I hope for is that you know how to play those cards, and you play them well. What I have realized more than before is that we do not get to decide what will happen to us, however, we can decide how we are going to live. Is the life you are living now how you want to live? Is this the best you can be? You have the power to decide.
There are memories, no matter how much I think about it, no matter how much I try, I can never bring it back. There is no going back. Despite it all, I believe there will be an end to the storm. It will not destroy me. I may have felt it rip me apart and the winds may have slowed me down but when all is done, is when I have learned. This is when I have realized, just how strong I am. That if I can survive one storm, I am strong enough for one more, and one more. Pain in life is bound to happen. Nobody can escape it. Sometimes it makes you feel like life is against you and you cannot do anything but feel worthless in the moment. Then, perhaps you wonder, do I deserve this pain? No… I don’t think so. Perhaps it means you are growing and perhaps there is something to be learned. What happens to us does not define our lives. It lies in what we do about what happens. Your power lies in your response, not in your circumstances.
Life will never be perfect, no matter how hard you try. There will be days that make you question yourself, that make you feel like you’re losing your battle. Your heart will break, and life, for a split second, may feel too hard. Overall, you should never be ashamed or embarrassed by your wounds. I used to want to hide it, but now I embrace it. It’s a part of who I am. I am proud of my scars and overcoming every bump in the road was greater than anything else I ever did. My wounds made me dig deep and find something inside I didn’t know I had. My wounds had revealed me.
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Ivana was born in Sanski Most, Bosnia & Herzegovina, but moved to Canada at the age of three. She was diagnosed with LGMD a few years ago, and it has forever changed her life. She is a regular contributor, and her blogs will be everything she has learned along the way, and what she continues to learn today.
Photo courtesy of Amanda Renneberg
You may have heard about the lucky girl from Sherwood Park, Alberta who was finally able to meet her idol, Justin Timberlake, after months of garnering support on her Facebook page.
Amanda Renneberg – the lucky girl in question – is 27 years old, and is affected by Friedreich’s Ataxia (FA.)
“It’s probably pretty obvious that my life has not completely turned out how I hoped and dreamed it would, but really, who can say their life has traveled this journey exactly how they thought it should? I was diagnosed at 18 with FA. Friedreich’s Ataxia has drastically changed my life. I choose to deal with things as they come, so future expectations would not hinder me from living a meaningful life. Every person’s future is unknown to them, regardless of FA, so one day at a time is a very important life philosophy to embrace.”
Justin Timberlake played an important role in Amanda’s life as she has been a fan from the beginning in 1998 when ‘N Sync’s debut self-titled album was released worldwide. At the time, Amanda was 11 years old, and FA did not exist to her yet, “Justin is a huge inspiration to me. I love his music, his dance moves, he is so incredibly talented. His voice just has a power to make me feel good, he inspires me to move.”
Many fans try to get tickets, but how did the idea to start a social media campaign to actually meet Timberlake come about? “Back in August 2013 we drove to Vancouver to see him perform. After seeing him then, I thought it would be a dream come true to be able to meet him. So I started Facebook and Twitter pages to try to achieve a dream, what’s the harm in trying?”
The power of social media got Amanda’s story noticed by Global News, radio stations, and many other new outlets. Amanda gave several television interviews which she describes as, “…super nerve racking. I did several TV interviews, radio interviews, newspaper interviews…I was very nervous for every single one. I’m a small town girl – I had never been on TV before, but I would tell myself, JT is worth it! Raising awareness of FA is worth it!”
After months of getting her story out there, Amanda received a phone call from none other than Justin Timberlake himself. “I was absolutely speeches! I knew it was him the second he spoke. He was so kind, he told me he saw my newspaper article and he couldn’t wait to meet me in person.”
Amanda had already bought tickets for both of the tour dates in Edmonton, but those tickets ended up going to someone else, “I was given the royal treatment both nights at the concert – we were backstage in his friends/family room. Myself and three others were given VIP tickets! I was able to pay it forward and give away my two accessible seats for both shows.”
Photo courtesy of Amanda Renneberg
So how did she feel about finally meeting her idol? “It was the best 15 minutes of my life! I got to give my idol a hug and he picked me up! He pulled up a chair and sat beside me, he was so down to earth, so genuine, caring – just a great man. He made me feel so special. It is very rare for him to do meet and greets… He gave me concert memorabilia, and personalized 3 autographs for me. He asked how to spell my name… and I forgot! He just has that effect.” Many people are content with wishing, but Amanda asked, got help, and her dream came true, “It is feels surreal, I can’t believe it happened. So much more has come, it has brought just such international FA awareness. I’m the girl with FA that got to meet JT!”
“Living with a neuromuscular disorder is anything from easy, but don’t let it define you. Do the things you love and take it day by day. Live in the moment.”
So, what was Amanda’s take away from this whole experience? “I just want more awareness, for more information out there. I realize in order to create the life of my dreams I must continue to push forward. ‘If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, whatever you do, you have to keep moving forward,’ Martin Luther King Jr.”
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If you want to see how much media attention Amanda and her story received, try typing “Amanda Renneberg” into Google. You’ll be there a while.
For more information on Friedreich’s Ataxia, click here.
La version française suit.
Over the years Canadian Fire Fighters, our biggest supporters have helped Muscular Dystrophy Canada to continue to fund research, provide essential services and equipment to people affected by neuromuscular disorders. Our long standing and strong partnership continues to be a historical pillar. Throughout our history and to this day, Fire Fighters have been creative in their fundraising efforts. Fire Fighters have had chicken wing eating contests, car washes, motorcycle rides but the most recognizable and used is the Fill the Boot campaign or the Fire Fighter Boot Toll. Even with newer events like the Rooftop Campouts money is still largely collected in a Fire Fighter’s boot.
Below is a photo from the Muscular Dystrophy Reporter Spring Issue from 1966, showcasing the, “new amusing technique of receiving contributions.”
The Fill the Boot has its roots dating back to the early 1950s in the Boston, Massachusetts area of the United States of America, a Fire Fighter came across a colleague who was with an old friend. The friend had two sons, both affected by neuromuscular disorders, who needed money for their care. With canisters in hand, the Fire Fighters raised $5,000. This grew Boston-wide, and during the International Association of Fire Fighters 22nd convention in 1954, the original fundraisers from Boston campaigned for the cause. The IAFF set up the partnership with the Muscular Dystrophy Association, which was also inherited by the Muscular Dystrophy Association of Canada soon after its founding.
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La tradition des barrages routiers
Au cours des années, les pompiers canadiens, nos plus fidèles alliés, ont aidé Dystrophie musculaire Canada à financer la recherche et à fournir des services essentiels et des aides techniques aux personnes touchées par une maladie neuromusculaire. Ce partenariat de longue date continue d’être un pilier de notre histoire. Si, au fil des ans, les pompiers ont toujours fait preuve de beaucoup d’ingéniosité pour recueillir des fonds (concours de mangeurs d’ailes de poulet, lave-o-thons, tournées à moto, etc.), le moyen le plus souvent utilisé et le plus facilement reconnaissable est sans conteste le barrage routier. Même dans le cadre des plus récents événements-bénéfice, par exemple les campings sur le toit, c’est encore le barrage routier qui, le plus souvent, sert à récolter des fonds.
La photo ci-dessous, tirée du numéro du printemps 1966 du Muscular Dystrophy Reporter, montre cette « nouvelle technique amusante de recueillir les contributions ». (en anglais seulement)
Les barrages routiers remontent au début des années 1950. Dans la région de Boston, au Massachusetts, un pompier rencontra un ami de longue date, lui aussi pompier, dont les deux garçons étaient atteints d’une maladie neuromusculaire. Le père ayant besoin d’argent pour payer leurs soins, les deux collègues se mirent à tendre leur tirelire aux passants et réussirent ainsi à recueillir la somme de 5 000 $. Très vite, cette pratique s’est répandue dans toute la ville et en 1954, lors du 22e congrès de l’International Association of Fire Fighters (IAFF), les deux pompiers de Boston firent campagne pour leur cause. L’IAFF s’est alors associée à la Muscular Dystrophy Association américaine pour se transférer par la suite à l’Association canadienne de la dystrophie musculaire, peu de temps après sa fondation.
La version française suit.
The Medical Advisory Board was created in 1958, currently known as the Medical and Scientific Advisory Committee. It provides advice and makes recommendations to the Board of Directors on research policy, granting programs, and funding. The Committee is comprised of dedicated volunteers from across Canada who have expertise in neuromuscular disease; together, they represent various perspectives from the health professional and patient communities.
Here is the introduction of the Medical Advisory Board and its first Chairman from page five of the April 1958 issue of the Muscular Dystrophy Reporter.
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D’abord créé sous le nom de Conseil consultatif médical en 1958, le Conseil consultatif médical et scientifique remet au conseil d’administration de Dystrophie musculaire Canada des avis, conseils et recommandations sur sa politique de recherche, ses programmes de subventions et son financement. Issus de toutes les régions du pays, chacun des membres de ce comité possède une expertise reconnue dans le domaine des maladies neuromusculaires. Ensemble, ils représentent les opinions et points de vue diversifiés du milieu des professionnels de la santé et de celui des patients.
Parue dans le Muscular Dystrophy Reporter d’avril 1958, la coupure de presse qui suit présente aux lecteurs le premier président du Conseil consultatif médical de l’époque, le Dr A.L. Chute (en anglais seulement).
La version française suit.
For 60 years Muscular Dystrophy Canada has been dedicated to finding a cure and funding research for neuromuscular disorders. Throughout our history and with the support of our donors and healthcare partners we have funded leading Canadian researchers and international research projects. This has led to advancements in treatments and has helped Canadians affected with neuromuscular disorders live longer, more enriched lives.
One of the biggest breakthroughs came in 1987. Dr. Ronald Worton, renowned medical researcher and founding CEO of the Ottawa Hospital Research Institute, and his team at The Hospital for Sick Children located the casual gene for Duchenne and 
Becker muscular dystrophies. This discovery has led to further research and clinical trials to find treatments and cures, and better diagnosis practices. It was also groundbreaking to find that both Duchenne and Becker muscular dystrophies are caused by a mutation on the same gene, though the mutations are different.
In April 2014, Dr. Worton will be inducted into the Canadian Medical Hall of Fame.
Click here to read more about Dr. Worton.
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Depuis 60 ans, Dystrophie musculaire Canada se consacre à trouver un moyen de guérir les maladies neuromusculaires et finance la recherche en ce sens. Au cours de notre histoire, et avec le soutien de nos donateurs et partenaires du domaine de la santé, nous avons soutenu financièrement des chercheurs canadiens de premier ordre ainsi que de grand projets internationaux qui ont permis de réaliser de grands progrès dans le traitement de ces maladies et d’aider les personnes qui en sont atteintes à vivre mieux et plus longtemps.
L’une des percées les plus importantes s’est produite en 1987, lorsque le Dr Ronal Worton, chercheur médical renommé et premier chef de la direction du Ottawa Hospital Research Institute, et son équipe du Hospital for Sick Children ont localisé le gène à l’origine des dystrophies musculaires de Duchenne et de Becker. Cette découverte a mené à d’autres recherches et à des essais cliniques en vue de mettre au point de nouveaux traitements thérapeutiques et curatifs et de meilleures pratiques diagnostiques. Le fait de découvrir que ces deux formes de dystrophie musculaire étaient causées par des mutations différentes dans un seul et même gène allait aussi donner un élan important à la recherche en ce domaine.
En avril 2014, le Dr Worton sera intronisé au Temple de la renommée médicale canadienne.
On trouvera plus d’information (en anglais) sur le Dr Worton au : http://ow.ly/uACeg
At this year’s Toronto, Ontario event, we will be hosting a local talent show.
If you have a talent, we want you to share it! Whether it’s wiggling your nose or singing a song, show off your moves and get into the spirit of fun at the Walk for Muscular Dystrophy!
You can be an individual or participate as part of a group, the ideas are endless. There is no minimum time requirement, but a maximum of 2-3 minutes per performance.
Spots are limited! The first six acts to sign up will be a part of the show. To share you talent, please e-mail walkformusculardystrophy.on@muscle.ca. You will receive a confirmation telling you if you are one of the first six.
We look forward to seeing the show!
Let’s Make Muscles Move: A Blog from Muscular Dystrophy Canada 