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.


Respiratory care education session held with Dr. John Bach

Dr. Bach persevered through Hurricane Sandy and was able to join us for an exciting day of learning on November 2nd at the Nova Scotia Rehab Center in Halifax. Muscular Dystrophy Canada was so pleased to provide this much needed learning opportunity for our clients and professionals in the Atlantic region.

Dr. Bach discussed his individual cases, success stories, his approach to non-invasive ventilation and his concerns with the use of oxygen when persons with neuromuscular disorders are in respiratory distress. Lori Gillies of Quality Respiratory Care was on hand with equipment, and together with Dr. Bach, measured blood gas levels, lung volume levels and demonstrated the use of cough assist machines on more than willing clients of Muscular Dystrophy Canada. One person describes the experience as “an amazing opportunity. It was informative yet scary to realize how little I knew. I had a few ‘aha’ moments.”

We appreciated both Dr. Bach’s and Lori’s passion and patience in discussing with individuals their situation and level of understanding about what should be done in relation to their respiratory health and care.

There was an excellent turn out of professionals working in the field from all parts of the Atlantic earlier that day. It was very encouraging to see their passion as well as their concern for providing the best and most up to date care for Respiratory Health.

Thank you to all those who attended our Respiratory Care Education Session at the NS Rehabilitation Center and for taking advantage of this learning opportunity and being proactive in improving your respiratory health!

We hope to hold more of these sessions in Atlantic Canada this coming year to go hand in hand with the long anticipated launch of our two respiratory care manuals; one for professionals working in the field and one for individuals living with neuromuscular disorders, that Muscular Dystrophy Canada has been working on together with Joe Foote of Quality Respiratory Care and Dr. Colleen O’Connell of the Stan Cassidy Centre for Rehabilitation. Look out for them!

For more information on Dr. Bach, visit his website.

Asha Noel-Hart is a Services Support in the Atlantic Region.

Consciously Shifting Gears

“He has achieved success who has worked well, laughed often and loved much.” -Elbert Hubbard

Balance is an incredibly important idea that can create space, clarity and flow in our lives. Every once in a while we shift in and out of balance, and in order to re-stabilize the balance in our lives we have to be consciously aware of what creates a healthy balance in the first place. Things that we value or choose to fill our time with are diverse and vary person to person. It is valuable to look critically at all the aspects of our lives in order to see what we are needing more or less of in order to create that equilibrium.  In order to re-calibrate the balance in my life, I do a dynamic exercise that I want to share with you!

To start, create a pie chart with different aspects of your life (to narrow the focus, we will say a snapshot of a week). Include all things that you fill your time with.. and be honest! For example, school, family, friends, computer, TV, activities… Each section will be a loose representation in size of how much time you spend on the specific area per week. Your pie chart will be completely unique to you.

Then, on the other side of the paper – start over and use the same things that you have on the first pie chart but make the sections bigger or smaller displaying more of a refection of how much time you would like to spend on each area within your week.

Be realistic and get creative with your “possibility” pie chart. The idea is to shift and re-prioritize what’s already in the first pie chart instead of trying to add more things in to fill up your time. Put positive energy and thought into the exercise and through creativity, make it come alive on your paper.

Once you have completed it, congratulate yourself for taking the time to critically look into your life and enjoy the feeling of having an intention set. If you put it out there with positive intentions and with true dedication, it will start to actualize in its own way throughout your life. Your own balance scale will start to feel a sense of equality that is just right because you created it with the things you already do!

We all have the power to create balance our lives, so I encourage you to take the time and effort to invest in your self-reflection. It will be well worth the effort!

Kendal Gerus is a MuscleFacts and Bridges to the Future Program Coordinator.  This article is an excerpt from Bridges to the Future newsletter, you can read the full version here.

“Life is a balanced system of learning and evolution. Whether pleasure or pain; every situation in your life serves a purpose. It is up to us to recognize what that purpose could be.” -Steve Maraboli

Edmonton THRILL The World 2012

On October 27, 2012, fifteen dancers of all ages in Edmonton joined “Thrill the World” (TTW), simultaneously dancing Michael Jackson’s Thriller with over 10,000 dancers from around the world!  Two-time TTW Edmonton organizer Chelsea Dusfresne, did an outstanding job organizing every detail of the event – from recruiting volunteer photography and videography, promoting the event through social media and local community calendars, soliciting and preparing a well rounded silent auction, to planning and leading dance workshops to teach new dancers the Thriller dance.

Though Chelsea has always been focused on creating awareness for important causes in her community, it was during her first summer spent working at Muscular Dystrophy Canada’s Edmonton Community Office that she became passionate about raising funds and awareness for those affected by neuromuscular disorders.  She decided to make TTW Edmonton 2012 a fundraising event for Muscular Dystrophy Canada and did a super job raising over $600 in proceeds from the event.  While planning the event Chelsea did an incredible job connecting with the Grant MacEwan Student’s Association and gaining full support for a “Thrill Club” on campus, and even connected with Edmonton’s local Thriller dance group, Thrill The Ave, in order to keep the momentum moving all year long!

TTW Edmonton is already in the planning stages for 2013 – with plans in the works to entertain at the Edmonton Safeway Walk for Muscular Dystrophy!  Be sure to check out TTW Edmonton’s website, where you can see photos from the event along with the video action!

Day in the Life: Karen Dunbar, Services Specialist

Karen Dunbar is a Services Specialist for Muscular Dystrophy Canada in the Ontario and Nunavut region, one of a number of Services staff across the country.  Karen helps registered clients with systems navigation including assistance with paperwork and finding resources.  She offers her advice on many service related topics to help clients, and speaks at various functions to spread the word about Muscular Dystrophy Canada and the many programs available including Muscle Facts and Information Days.  Karen plans the Information Days throughout Ontario.  She secures local speakers to share their expertise on disability management, arranges for community groups to fill booths and share their knowledge for the day as well as personally reaches out to clients to let them know about the event.

Karen recently planned a Networking and Information Day in Sault Ste. Marie, Ontario along with two partners from March of Dimes Canada and Canadian Paraplegic Association Ontario.

Tuesday, October 30, 2012:

8:30 a.m.: After spending Monday travelling to Sault Ste. Marie and assembling gift bags for participants while arranging all last minute details, Karen spends Monday night at the venue hotel.  On Tuesday morning she heads to the conference room in the hotel to check the room’s arrangement, set up the registration table and gift bags, and organizing conference exhibitors.

10:00 a.m.: Muscular Dystrophy Canada’s Executive Director of Ontario, Stacey Lintern, welcomes the 60 delegates, which include individuals with neuromuscular disorders, individuals with disabilities, caregivers and health professionals.  Karen facilitates the day by introducing and thanking the speakers whose session topics include:

  • Red Cross and Emergency Preparedness
  • Vulnerable Persons Registry
  • Self Advocacy
  • Accessibility Legislation
  • Community Health Living Project/Fitness for those with barriers
  • Wounds: What Can We Do
  • North East Community Care Access Centre
  • Ontario Disability Employment Supports

11:00 a.m.: Karen presents on self-advocacy.  Her message includes:

  • Individuals must know and understand their rights and responsibilities
  • How to effectively and assertively advocate for your own needs.
  • You know yourself best and it’s up to you to say what you want and need, and make sure you are heard!
  • The solution may not be particularly quick or easy, but making the issue known is the first step toward resolution.

12:15 p.m.: Karen makes her way around the room to chat with those in attendance at lunch and on breaks.  She puts a face to a name for many of the people she talks with because she spent time personally calling clients in the area to invite them to the event.  When she chats with those individuals, she follows up with them on any issues previously discussed, like doctor referrals, paperwork advice or making a plan for future needs. The interaction and personal contact at Information sessions broaden the discussion moving forward.

3:30 p.m.: Once all speakers have presented for the day, Karen is available to delegates who have ideas or questions that have come up throughout the day.  Karen helps with clean up, thanks booth exhibitors, and review event evaluations.  Karen will take suggestions and feedback from the evaluation to plan and improve and the next event.

The Information and Networking Day was a success! All the hard work paid off, and Karen is pleased to assist and connect with a new group of individuals in Sault Ste. Marie.  Karen returned to her hotel room to check on email and voicemail, many from clients from across the province who can use her assistance.  Early the next morning, Karen will travel back to the Toronto area and continue her daily tasks of assisting clients with Services.

Community of 800 rallies support for young boy with unbelievable fundraising efforts

Lashburn, Saskatchewan is a small community with a big heart.  They moved their muscles in show of support of a local family on September 22 by hosting a dinner and silent auction.  300 tickets were printed and up until two days before the event, only 30 tickets had been sold in the town of 800 people. But this little community and surrounding area took up the challenge and sold the event out.

The organizer, and mom, Geri Coolidge had no idea what to expect when she started planning this event. Her goal was to raise awareness about Duchenne Muscular Dystrophy and raise funds to find a cure for this disorder.  The Coolidge family have utilized Muscular Dystrophy Canada staff to get information and support.  Her son, Preston, was diagnosed earlier in 2012, and after the acceptance of the diagnosis the Coolidge family got to work.  End Duchenne magnets were created and sold, old cell phones were collected for refund, and the fundraiser night started to come alive. In a very short time, Geri and Preston have raised awareness of muscular dystrophy in their community, so much so that community members reached out themselves to Muscular Dystrophy Canada staff to learn more about DMD and how they can help the young boy in their community.

The evening featured a dinner, silent auction and live entertainment with a community of support who helped raise over $46,713.55. On October 19, Preston and Geri presented Muscular Dystrophy Canada with a cheque from their End Duchenne fundraising evening.  The local community has requested this become an annual event.

Muscular Dystrophy Canada staff are available to offer support and resources for clients, individuals with neuromuscular disorders, their families, their communities or anyone looking for information or ways to help.

Fire Fighters and Walk for Muscular Dystrophy come together for excellent results

The Brandon Safeway Walk for Muscular Dystrophy was on October 6th.

During the Brandon Fire Department’s Rooftop Campout held last March, the Fire Fighters invited the 2012 Brandon Walk Ambassador, Gerald, to attend a fundraising pancake breakfast in the hall that they were camping on.  Gerald told the Fire Fighters that he couldn’t get there because his lift had broken and he was essentially stuck in his home.  Sheldon (the Fire Fighter advisor in Brandon) called the Holland, Manitoba Fire Department (which is where Gerald lives) and asked them to go and carry Gerald and his power wheelchair out of his house.

While Gerald was at the breakfast, Muscular Dystrophy Canada staff between Manitoba, Edmonton and Vancouver, it was confirmed that the funds from the Rooftop Campout could go to the equipment fund and essentially pay for the repairs to Gerald’s lift.  This situation really demonstrated the fellowship and connection between all of Muscular Dystrophy Canada’s partners and volunteers.  At Brandon Walk on October 6th, Gerald and his family honoured Sheldon and the rest of the Brandon Fire Department with a statue and a short speech about how kind and caring they all are.  A very touching moment!

Also during the Brandon Fire Fighter’s Rooftop Campout, little Scotty took a fire boot to school and raised money for the Fire Fighters all on his own (his dad is a fire fighter), and he received an Award for “Excellence in Fundraising”.  The family was invited to attend the Brandon Walk just to receive the award, and they fundraised again and gave a donation toward the Walk as well! Such wonderful supporters!