On Sunday June 16th, 52 people came together in Moose Jaw, Saskatchewan to raise $1, 130 towards supporting the Families of Spinal Muscular Atrophy Canada. Read on to discover the ins and outs of this spectacular accomplishment!

What is Spinal Muscular Atrophy?

Spinal Muscular Atrophy is a motor neuron disease which affects the voluntary muscles, impacting abilities such as crawling, walking, head and neck control, even swallowing and breathing.  A person with SMA has completely normal intelligence.

  • 1 in 40 people are carriers of the SMA gene.
  • SMA is the #1 genetic killer of Children under the age of 2.
  • SMA can strike anyone of any age, race, or gender.
  • There is currently no treatment or cure.

-Families of SMA Canada Society (FSMAC)

Penny Parade!

Upon arrival, our wonderful guests registered and many made extra,  generous donations.  Receiving an information pamphlet on SMA, a Tutti Frutti coupon and a Penny Parade ticket all tucked into a thank you card, they soon set out to enter for their chance to win one of the fabulous prizes.  All prizes were sponsored, thanks to the following contributors; Saskatchewan Parks & Recreation, Triple Ymobile, Culligan, Double Shift Conditioning, Wrapture, Moose Jaw Fudge Factory, Crystal Prior of Pampered Chef, Cathy Bradford of First Chiropractic & Wellness, Superstore and Windmill Greenhouses.

Here comes the sun!

After stretching it out and settling in to each others company, we set out on our journey. With a 70% chance of rain, our faithful fifty guests were determined to Walk & Roll despite the threatening skies. Purple and orange balloons danced in the air around us, drawing the attention we desired in order to promote our rise against the cruel and persistent thief of so many young lives.

I am truly so grateful for all of the previous sponsors as well as the big, open hearts of our guests because without this collaboration in our community- none of this would have been possible!  I was thrilled to see the interest in the people who are relatively alien to the SMA community and their willingness to learn more and support this important cause.   A vital aspect to the fundraiser was the interest in the Moose Jaw Times Herald reporter, Austin Davis who joined us to share with the community what our event was all about. Speaking with the father to my dear friend Shailynn Taylor -who was diagnosed with SMA at eighteen months and presently attending a major SMA Conference in California- offered an interesting truth on the effect  of the Walk & Roll for our community.

It gets a whole different group of people. If you go to an SMA conference then there’s people but they’re all involved with the disease,” Taylor said. “Here, it’s a bunch of people that lead a whole different lifestyle and it kind of puts it in perspective for them. It raises awareness and gets people thinking about it.

“Rolling toward a cure” by Austin M. Davis of the Moose Jaw Times Herald

All giggles

Also featured in the article was the Lavalee family- Max, Genvieve, and mom Andrea, who is mimicking the pageant stance she has caught me flaunt a time or two- cracking smiles on all of our faces.   I met this wonderful family at the Muscular Dystrophy Youth Conference in Saskatoon.  After connecting with Andrea, I knew I had to invite this lovely crew to join us at our Walk & Roll.  A firm believer in the importance of teaching Max, 8, the need to self advocate and understand the support different communities have to offer, she quickly agreed to make the long drive down from Meadow Lake, Saskatchewan to participate.  Thanks to the Temple Gardens Spa & Hotel, the Lavalee family was welcomed into Moose Jaw with a complimentary stay to relax from their long drive and afternoon of outdoor fun.

Family Fun

From Butterflies to Tigers to Daisies, the faces of our fundraisers were transformed into those of a more colourful nature.  The idea of getting together, learning something new, and raising awareness to a deserving cause is what the Families of Spinal Muscular Atrophy Canada Organization is all about.  Driven by self- motivated Families of SMA in our country, they are a non-profit group focused on supporting each other and funding research to find a cure for this lurking disease.  I can not begin to express the way becoming involved with this organization has not only changed my life, but changed the life of my sister-from-another-mister, Shailynn Taylor as well.  Without the support of FSMAC, Shailynn would not have had the opportunity to attend conferences such as the one in Saskatoon as well as Disneyland.  These conferences are vital, as they offer the tools needed to live a more independent life as well as the opportunity to undergo trial treatments required to one day find a cure for SMA.

While planning the Walk & Roll event at first seemed intimidating and overwhelming, I learned quickly the importance of simply accomplishing at least one task day that will help me reach my goal.  Progressing in baby steps can make any dream become a reality with the right level of perseverance,  dedication, and optimism.

These fundraising events are the baby steps to bringing broader awareness and proper research required to find a cure to heal the bodies of the Shailynn, Max, and thousands of others in need.

I would like to leave you with a Thank You from the very bottom of my heart for taking the time to read about SMA and hear our voice.  I encourage you to watch the heart-string-tugging video of Stella: An SMA Story.

 

 

 

 

Written by: Justine Farago Tagged with:, , , , , , ,

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