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.

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Mom and employee feels emotional impact of Walk for Muscular Dystrophy

In June 2007, as Muscular Dystrophy Canada’s Alberta Chapter Advisor, I had the privilege of attending Muscular Dystrophy Canada’s National Chapter Conference.  Meeting people who were as passionate as I about our mission was wonderful, but learning about the plan to roll out the Walk for Muscular Dystrophy as our national signature event in 2008 left me breathless and filled with hope and excitement.  Watching video of the Halifax Walk for Muscular Dystrophy and hearing about the success of these events in Eastern Canada made me antsy to get home and start planning for Alberta to be on the map with the Walk for MD!  I remember sitting around socializing on the Saturday evening with volunteers and Fire Fighters from all over Canada, and saying to my Alberta gang – “We HAVE to make this happen in Alberta next year – Edmonton for sure!” and agreement all around that we were committed.  In 2007, Lethbridge Chapter President, Jackie Simpson, went home and made a September Walk for MD happen, raising about $1500.  Alberta Walks for MD had begun!

In early 2008 a small committee comprised of Deb Cumming, Rachelle McGonigal, Karin Harrison and myself met for the first time and began plans for a June Walk for Muscular Dystrophy in Edmonton.  Soon after, Christie Tobia also joined our group.  We had full support of both Edmonton and Strathcona County Fire Fighters and we were enthusiastic and ready to make our event the biggest success it could be – and successful it was, raising over $35,000 that first year!

The Walk for Muscular Dystrophy is more than just a fundraising event.  For me, the Walk for MD represents hope and community.  At the time I took part in launching the Walk for Muscular Dystrophy in Western Canada I was first and foremost Ben’s Momma.  Ben, then just turning 11 years old, was still not fully diagnosed, and we were in the midst of many tests and visits to medical professionals to try to pinpoint closer just what was going on for him.  In April 2008, with Muscular Dystrophy Canada’s support, we traveled to Ontario to see a specialist in Mitochondrial disorders, who performed another muscle biopsy and examination.  In June, just one week before the first Edmonton Walk for Muscular Dystrophy, we received Ben’s official diagnosis of Mitochondrial Myopathy.  These two events are forever linked in my mind.  Now Big Ben’s Bandits were not only working to raise awareness about neuromuscular disorders in general because our Ben’s nemesis had a real name and as a family we were even more determined to fight it and help him to dream big and live his best life.

I have been at all but four Walk for Muscular Dystrophy events in Alberta, first as a volunteer and then beginning in 2010 as Alberta’s Fundraising and Community Development Coordinator.  I have worked closely with every Walk for Muscular Dystrophy lead and committee in Alberta – encouraging, trusting, and celebrating the growth of the Walks for MD.  At each and every event we meet new families who are as passionate as we are to help their loved one be independent, healthy and happy.  Sometimes, these families are struggling to accept a new diagnosis, and I can’t help but remember the day I took the phone call about my own son’s diagnosis just a week before our first Edmonton Walk for Muscular Dystrophy and how much comfort we found in our Chapter community and Walk for MD that year (and since) with the knowledge that we are not alone on this journey.

In Alberta we now walk for muscular dystrophy with the generous support of Canada Safeway, and of course our Fire Fighters, in eight communities right across our province.  In 2007, Alberta raised $1500 at the Walk for Muscular Dystrophy and heightened awareness in one small city.  In 2011, Alberta raised nearly $160,000 and priceless awareness across our province – an incredible team effort that continues to grow!   There are so many amazing reasons to celebrate at our fifth anniversary of the Walk for Muscular Dystrophy, here in Alberta and right across our great country!

Author: Terri Tumack began work as Alberta’s Fundraising and Community Development Coordinator in late 2009. She has been an active volunteer with Muscular Dystrophy Canada since 1998 when her son Ben was first diagnosed with a non-specific neuromuscular disorder.  Working to build the Muscular Dystrophy Canada community in Edmonton, and later across Alberta as Chapter Advisor, has been her passion since the early days of her involvement with the organization.

Fire Fighter discusses Rooftop Campouts on CTV Edmonton

Amongst the various and numerous ways Fire Fighters support Muscular Dystrophy Canada the Rooftop Campouts are rapidly becoming a popular winter fundraising event.  Seven years ago Rooftop Campouts were introduced in Alberta as another way for Fire Fighters, who have partnered with us since 1954, to challenge their communities to raise awareness and funds for Muscular Dystrophy Canada.  Rooftop Campouts have since expanded to various cities throughout Canada.  Fire Fighter participants from these areas will endure below freezing temperatures, inclement weather, and whatever else nature throws their way during multi-day Rooftop Campouts.

From February 21st to 24th, five Fire Fighter groups in Alberta will campout.  These events will be held in Edmonton, Strathcona, Leduc, St. Albert and Spruce Grove.  Paul McGonigal, a long-time supporter and inaugural Rooftop Campout planner from Edmonton appeared on CTV Morning Live on CTV Edmonton to speak about the Rooftop Campouts.  Paul was joined by Chase, a young boy with muscular dystrophy.  Watch the video:

Fire Fighter Paul McGonigal on CTV Edmonton

Rooftop Campouts will also be held in Prince George, BC (March 10-11); Winnipeg, MB (March 13-16); London, ON (March 15-18); Medicine Hat, AB (March 16-17); Fort McMurray, AB (March 28-31); Brandon, MB and Saskatoon, SK.  You can support these Fire Fighters by joining the Rooftop Campout Facebook page or by visiting and donating during the event!