When Amanda Met Justin

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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.”

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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.

The Importance of Education and Advocacy for Respiratory Care

TWD 1In October 2010, Jeff Sparks and Tracy Ryan arranged a presentation on respiratory health with a respirologist in St.John’s, Newfoundland and Labrador. At the time, the presentation was a revelation to clients and staff at the Janeway, who had not heard a great deal about the importance of breathing aids, and respiratory health. Following on that initial presentation, communication was maintained with the Janeway clinic staff on the topic; one of the clinicians subsequently attended the workshop given for healthcare professionals by Dr. John Bach in Halifax in the fall of 2012.

Muscular Dystrophy Canada and March of Dimes held Health and Wellness Information Days for people living with a disability, on October 24 2013 in St. John`s. One of the key components was a workshop on respiratory care by Vital Air. The staff at Janeway not only took part in this initiative, but promoted this event as well. The day turned into a great forum for connecting persons with a disability, caregivers, and professionals on key issues. With lively discussions, and passion, it is evident that there is a need for more advocacy, and spaces to bring together people on disability issues whether it be respiratory care, or transportation.

All of these initiatives have led to ongoing communication and with the help of Janeway, has made a difference. The clinic coordinator, Jeanette Ivey, had long advocated for a respirologist, and a respiratory technician to be included as part of the clinical team. This past year, that has indeed happened, but the Janeway team has taken it a step further. When we visited the neuromuscular clinic in October 2013, we learned that they have organized patient visits so that those who are at the staff of needing respiratory support attend clinic on the same day. That change in approach ensures the patients can be followed more closely, and the respirologist will have more dedicated time with them. They have also integrated respiratory health more generally into all neuromuscular patients’ monitoring and care plans. Finally, they have been advocating with patients to gain them access to breathing aids such as cough assist machines.

While we can’t claim credit for all these changes, there is no doubt Muscular Dystrophy Canada has played a role in the Janeway Clinic’s integration of respiratory health into their clinical practice for people with neuromuscular diseases.

Family takes pride in being role models

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The Shabatoski Family

Team Shabby has participated in the Saskatoon Safeway Walk for Muscular Dystrophy for six years. The Shabatoski family is at the centre of Team Shabby, including mom Jackie, dad Dean, Braiden, 21; twins Samuel and Emma, 10; and twins Tyson and Jackson, 7. Braiden, Samuel and Tyson are affected by Duchenne Muscular Dystrophy.

In 2013, Braiden was the Saskatoon Safeway Walk for Muscular Dystrophy Ambassador.  This was an honour for the family and a great way to include all the family’s friends in their Walk for Muscular Dystrophy efforts. Braiden takes his responsibility as role model seriously, especially as a role model to his two younger brothers. Braiden loves hanging out with Samuel and Tyson, encouraging them to keep their spirits up and enjoy life. He is around to answer their questions and help them through any struggles they may have. Braiden is dedicated to being available to his brothers, and raising awareness through the Walk for Muscular Dystrophy.

Team Shabby participates in the Walk for Muscular Dystrophy because it is important to them to raise money to eventually find a cure for neuromuscular disorders. They also put great emphasis on raising awareness. Jackie Shabatoski explains “before Braiden was diagnosed, we had no idea what muscular dystrophy was. We just want our sons to be treated respectfully, and that only happens when there is a level of understanding and empathy.”

The Shabatoski family is supported by their extended family every step of the way. Dean has four siblings and Jackie has three.  The whole family shows up to each Saskatoon Walk for Muscular Dystrophy event. Family friends came out in larger numbers this year to support Braiden. Team Shabby grew to about 50 members this year.

team shabbyPart of the team’s plan is to fundraise leading up to the Walk for Muscular Dystrophy event.  In April, Team Shabby hosted a rib night fundraiser. The supper included a silent auction, raffle items and 50/50 draw. Over 120 community members, friends and family came out to support the event.   A comedian friend emceed the fundraiser and performed improv. All the auction items were donated by the community. One woman donated a hand stitched quilt with a history of Clavet/Saskatoon depicted. Ottawa Senator Jared Cowen, who is from Allan, SK donated a jersey. There were footballs signed by Saskatchewan Rough Riders including Mike McCullough, were also auctioned. The rib night raised $6,800, and Jackie’s mother fundraised $2,000 at a other fundraising  in Humboldt, SK.

The family’s favorite part of the Walk for Muscular Dystrophy is meeting new people and getting together with friends and family. After the Walk for Muscular Dystrophy, the Shabatoski’s invite the team back to their house for a barbeque and social.

Jackie says, “we get to enjoy being surrounded by those who mean the most to us. I love to look around at everyone visiting and enjoying each other’s company. It makes me count my blessings to have such a strong support system!”

Celebrating the Connections Across our Great Country!

Walk for Muscular Dystrophy Niagara 2012 012The Walk for Muscular Dystrophy season is well underway across the country.  Each year the Walk events across the country engage new individuals and new teams.  As staff and organizers it is always fascinating to watch the season unfold!  We plan, we organize and we wait and anticipate and encourage our past participants to get busy, sign up, and start spreading the word about the Walk – and the reason for the Walk.  Our clients and volunteers never let us down as they jump on board to fundraise and participate in the Walks each year, and year after year as we watch the Walks grow and the funds roll in we know that we are onto something good.

Vancouver Walk 2012-Team MaliyahIt is incredibly gratifying and exciting when we begin to draw connections between our clients in one geographic location and their friends and family participating at Walks in other geographic locations.  More and more often we are seeing this – mom with the muscular dystrophy diagnosis lives in Nova Scotia, and her daughter is walking for her mom in Alberta where she lives;  a young grandson is diagnosed with muscular dystrophy who lives in Alberta, and grandma and a ton of extended family are walking for him in Ontario where they live; a woman’s childhood friend from the Maritimes dies from complications caused by muscular dystrophy and she walks in Alberta each year in memory and honor of her friend. These are just a few of the many examples.

EdmontonWalk2008These connections tell us that the Walk is working!  By holding Walk events in key locations across the country we ARE raising awareness, spreading information, and making sure people know about muscular dystrophy – YOU are raising awareness and making a difference by honouring and celebrating YOUR loved one on Walk day no matter where he or she is, and no matter where you are!

Thank you!!!

Do you have any connections across Canada for the Walk for Muscular Dystrophy?

Terri Tumack is a Fundraising and Community Development Coordinator in Alberta.

Day in the Life: Sparky the firedog at the HOP for Muscular Dystrophy

Hop at Bedford SouthThe HOP for Muscular Dystrophy is a national educational fundraising initiative that promotes compassion, caring and acceptance of differing abilities. The program provides an early introduction to inclusiveness and an understanding that physical differences do not change people on the inside to pre-school and elementary school-aged children.

HOP events occur in most Canada provinces around Easter time.  Each year, more than 10,000 children in Atlantic Canada “hop” to make a difference for families affected by a neuromuscular disorder.

Sydney LewisSparky the firedog loves to visit kids and thank them for supporting Muscular Dystrophy Canada; Fire Fighters have been Muscular Dystrophy Canada heroes since 1954.

Sydney Lewis, a 10 year old student in Grade 5 at Alderney Elementary School in Dartmouth, Nova Scotia is suiting up this year to put some “spark” into Sparky. Sydney loves her iPod Touch and Sim game, is a choco-holic and enjoys hanging out with friends. Sydney’s brother Kaleb is 12 is affected by Becker’s muscular dystrophy and her entire family volunteers with the Halifax Chapter of Muscular Dystrophy Canada.

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8:00 a.m.: Crawwwwwl out of bed; sure is chilly and dark out! Breakfast and be ready for pick up at 8:30 a.m.

Sparky at Hops9:00 a.m.: Arrive at Alderney Elementary School. Change quickly into Sparky gear including very large and heavy head and giant shoes! Do the “YMCA,” “the Chicken Dance” and the “Electric slide” with 100 elementary students.  Hugs and high fives to all of the hoppers who present Muscular Dystrophy Canada with a cheque for $1100! Now it’s time for a picture with the top fundraising student and school principal. The student is excited to know he’s won “Firefighter for A Day” and will get a ride to school in a fire truck next week.

11:45 a.m.: Arrive at Bedford South Elementary School — wow 460 excited students sure are noisy!!  I watch kids filing into the gym by class wearing their brightly colored and decorated bunny ears. Six year old Wesley Collins, who is affected by Duchenne muscular dystrophy, attends this school and is happy to see the entire school turns out to show their support! Watch quietly as the HOP for Muscular Dystrophy DVD is shown which teaches the students more about muscular dystrophy, caring and differing abilities. Then it’s time to hop, dance and MOVE our muscles! Join Bedford Volunteer Fire Fighters in thanking students and teachers for participating in the year’s HOP for Muscular Dystrophy and smile for the camera as CTV News films a HOP segment for Breakfast TV.

2:00 p.m.:  Arrive at Kids R Kids Daycare in Halifax- now these kids are little! Sparky and Muscular Dystrophy Canada staff visit each class and get lots and lots of hugs and high fives! The group listens to a story and then line up to receive a Muscular Dystrophy tattoo.

Sparky3:00 p.m.: We get to Voyageur Lakes Kids Academy, and these kids LOVE Sparky!  A few are a wee bit scared but Sparky waves and gets a smile and some hugs.

3:45 p.m.:  A quick stop at the Military and Family Resource Centre on the Halifax Naval Base and Sparky makes time for some healthy bunny snacks with the hoppers.  An obstacle course in their gym is a great way to move muscles, Sparky isn’t very fast but he makes it through.

4:30 p.m.: This is the end of Sparky’s day so it’s back to being Sydney.  After a dog day afternoon, Sydney is VERY tired and a little sweaty too! It’s worth it because the HOP campaign was an awesome day raising money and awareness for families affected by muscular dystrophy.

i AM WHO i AM Presentation – November 21, 2012

061Wow, what an exciting day! The Pine Ridge Secondary School once again welcomed Muscular Dystrophy Canada to their school for a wonderful i AM WHO i AM presentation of positive messages and opportunity to interact with one another.

This week was also part of anti-bullying month and in order to mark this event, Pine Ridge Secondary School held three assemblies that featured the motivational speaking and incredible dancing of Luca “Lazylegz” Patuelli, a National Muscular Dystrophy Canada ambassador.

i AM WHO i AM presentation Nov 21.12 024Luca provided the story of his triumph and how he became one of Canada’s best B-Boys in the break dancing world.  Luca’s message was both powerful and thought-provoking.  He shared how everyone has strengths and should live their life as they choose because everyone is an individual and should be proud of whom they are, which really upholds the motto “I am Who I Am.” Luca also combined this with his message of “No Excuses, No Limits” which means we can all do anything we want if we put our minds to it.  The performances were outrageous and included some high stepping moves and spins that simply were out of this world.  Luca not only performed his talents but shared the stage with many of the students from Pine Ridge Secondary School where they showed off their break dancing talents.  All in all it was an exciting day, which brought the message of acceptance and kindness to all, home.

On top of the three performances there were fundraising efforts to directly benefit Muscular Dystrophy Canada.  These included the sales of I am who I am T-shirts, wrist bands and a sub day fundraiser.

i AM WHO i AM presentation Nov 21.12 001Luca also sold his merchandise which included t-shirts and wrist bands with part proceeds going back to Muscular Dystrophy Canada.

Muscular Dystrophy Canada staff were on hand to celebrate this day and to answer questions on supports and services provided through Muscular Dystrophy Canada.

All in all an excellent day that was inspiring, informative, exciting and “sick” to quote Luca, which means excellent, so I am told.

Thanks again Pine Ridge Secondary School for the wonderful job in organizing such an awesome day and for inviting us.  We love the school spirit and the genuine warmness of you all.  See more pictures here.

Karen Dunbar is a Services Specialist in Ontario and Nunavut region.

Walk for Muscular Dystrophy is coming quickly: Sign up early!

The 2012 Walk for Muscular Dystrophy season starts on May 5, 2012! The Walk for Muscular Dystrophy is a fully accessible event for teams of family, friends, co-workers or classmates to gather for a day of fun, fellowship, and fundraising.  The Walk for Muscular Dystrophy aims to raise funds for research and services for Muscular Dystrophy Canada, but it also raises awareness and connects participants with others united by neuromuscular disorders. There is just over a month to get ready if you are participating in the Toronto Walk for Muscular Dystrophy, which is the kick off location for this year, the fifth as the National Signature Event.

The added bonus of signing up early is being eligible for the Early Bird Contest!  Simply register online by the early bird date, which is at least 30 days prior to the date of your local Walk event, for your chance to be entered into the contest.  You could WIN airfare for TWO to anywhere that Air Canada flies in North America, including the Caribbean!

The other important reason to sign up early is that you have more fundraising time!  Fundraising is an important aspect of the Walk for Muscular Dystrophy.  It can be helpful to utilize social media networks so post about why the Walk for Muscular Dystrophy is important to you on your Facebook, LinkedIn, Twitter and Google+ accounts.  Your enthusiasm is contagious, and by rallying your social networks you can inspire others to participate, volunteer and donate.  Visit www.muscle.ca/walk to learn more and register!