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Archive: September, 2012

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A Day in the Life: Luca “Lazylegz” Patuelli

28 year-old Luca “Lazylegz” Patuelli, professional B-Boy (Breakdancer) and motivational speaker lets us in on his life for a day.  Read ahead as the national ambassador for Muscular Dystrophy Canada shares a backstage pass to one of his jam-packed days at this year’s Youth in Action Conference in Calgary, AB.

 Saturday, August 26, 2012:

8:00am – Live interview on Global TV – Luca wakes up at 6:00 am to join Marla Spiegel (National Director, Research, Programs & Services) and head to the studio for the interview where they promote YIA12 and Luca’s inspiring message of  “No excuses, no limits.”

8:30-9:30am – In the taxi back to the hotel, Luca catches up on social media and tweets about the interview.  After a quick change of clothes, he meets up with several MDC youth delegates and their families for breakfast at the hotel.  Luca attends the Activism seminar at YIA12 presented by Danielle Peers, Ian Gordon and Lindsay Eales.  This informative and funny presentation works on recognizing, resisting, re-imagining and remaking the role of disability on a local scale and across Canada.

1:00pm – Periodical rest is important when you have Arthrogryposis like Luca or muscular dystrophy like many YIA participants, so after a short rest Luca heads to downtown Calgary to visit the Eau Claire Plaza for Pulse Studio’s HipHop All Style Dance Competition where he dances with local Calgary dancers.

3:30pm – Another taxi ride – and lunch en route – heading back to the hotel.  Luca participates in the discussion during the Sexuality and Healthy Relationships education session alongside Heather Cobb and Stephanie Lebrun. This session helps the youth discuss some of the myths, stereotypes and realities of healthy relationships and sexuality.  Luca helps participants reflect while sharing some of his personal experiences.

7:30-8:30pm – Luca attends the gala dinner after finishing sound check, setting up a merchandise booth, and resting and stretching in preparation for his performance.  Then Luca’s motivational entertainment performance for the 62 youth in attendance begins and the party starts!

9:30pm –Dance party with the rest of the Muscular Dystrophy Canada youth and adults is in full swing.  Luca shows off some of his skills as well as teaches some of the youth new dance moves and the youth show off what they already know.  Luca and his fiancée Melissa love hanging out with the YIA12 participants and see them bust a move!

11:30pm – Off to Bed!

Luca is always on the go; he travels a lot for his dance and motivational speaking schedule and loves to meet new people while spreading his message of “No excuses, no limits.”  Muscular Dystrophy Canada was extremely lucky to have Luca share his dance moves and positive attitude with everyone at YIA12!

Luca’s busy schedule continues into the fall as Luca and Melissa get ready for their dance program in Laval (Projet R.A.D) and Luca prepares for ILL-Abilities five-year anniversary festival October 19-21 in Montreal. Check the ILL-Abilities website for more details on both.

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Comprehensive look at Muscular Dystrophy Canada Services in Ontario

Muscular Dystrophy Canada offers a wide range of services and programs. We are committed to improving the lives of people with neuromuscular disorders.  Services differ in range throughout each region, so while different programs are varied depending on the area, each team of Services staff is dedicated to providing the best support, advocacy, information, education and equipment we can. The following comprehensive look at Services is from the perspective of an Ontario staff member and shares all the many advantages that Ontarians can have as a registered client with Muscular Dystrophy Canada.  Not all the listed information may be accurate for your region, please contact your Services staff to learn more.

Wow I can’t believe that summer is nearly officially over, and in a few short weeks fall will be upon us.  With September being National Awareness Month, what better time than to talk about Services and Supports offered through Muscular Dystrophy Canada in Ontario/Nunavut.

So first let me start my introducing myself, my name is Karen Dunbar and I have been employed as the Service Specialist for Ontario/Nunavut with Muscular Dystrophy Canada since October 2011.  In this position I have the opportunity to work with the service department and together we assist clients and those living with or supporting those living with neuromuscular disorders to live full lives with dignity, trust and respect.

Often I am asked what exactly a service specialist does.  Quite simply my answer is basically anything to assist our clients to get the supports, services and programs they need to the best of our ability.  In order to do this we need to focus on our five pillars which are:  education, equipment, advocacy, support and information.  We endeavour to assist clients find services, funding, supports, programs, etc. in their home communities.  In partnership with those affected by neuromuscular disorders we provide the necessary assistance to help address individual’s specific goals, and needs as well as seek the supports individuals and or their families require within the community.  We are here to listen, to assist in advocacy efforts and to assist

So if we look at the five pillars mentioned above, here is some of the assistance the Service team can provide.  First let’s discuss our equipment funding program.  Did you know that we can assist with the purchase of equipment by offering up to a maximum of $2640.00 towards each piece of needed equipment and or assistive device?  This program is open to anyone registered with Muscular Dystrophy Canada.  The steps are simple, complete a on line application found at www.muscle.ca, have an OT, PT or other designated health professional complete the section describing what type of equipment/assistive device is needed and why, then contact two different vendor’s to get quotes.  Once you have all information mail, fax or email it in for review.

Secondly Support which can include system navigation.  This can include assisting a client to find other sources of funding, apply for government support programs such as ODSP.  It can include helping a family complete an application for funding through Children with Severe Disabilities or Special Services at Home.  These are just a few examples.  We assist by offering support, this can include in community visits, support in finding a doctor or specialist, or clinic, different recreational services or in home health care as needed.  It can also include assisting a person to speak with their doctor or family around supports they need.  It can include assisting someone in getting appropriate supports through our local chapters or networking group or on line if the person is more remotely located.  We are only a telephone call or email away, and are willing to listen and help where we can.

Thirdly advocacy; this can include finding appropriate housing, a dietician or appropriate supports for a child or youth in school.  It can also include working with government to lobby for change.  It can include working with other community service providers to ensure you or your family are receiving the supports you need.  We continue to focus on assisting individuals and or their families to develop and or enhance their self advocacy skills by providing ongoing coaching and guidance so that needs are met on an ongoing basis.

Fourthly we offer support through education.  We have a comprehensive Muscle Facts Program that we present in schools to teach children about neuromuscular disorders.  This is a comprehensive program that covers everything from various disorders, to assistive devices, to acceptance etc.  It is individually developed for the specific school and child.  It is interactive, engaging and informative.  Not only do we offer this program for the youth, but also have one we can provide for the staff and administrators of the school.

And finally information sessions throughout Ontario.  These include guest presenters on everything from nutrition, exercise, respiriology, 72 hr emergency preparedness, wound care, self advocacy, financial planning and so forth.  These are open to service providers and anyone living with or supporting those living with a disability.  They are offered throughout Ontario at different times throughout the year.  The next one is scheduled for October 2012 in Sault Ste Marie, Ontario.  If you live in or around this area please contact me for location, date and topics to be covered.

We also support the Chapters by assisting in planning different presenters at their monthly meetings as requested by the members.  If you are looking for an afternoon or evening where you can meet other people who are living with or supporting those living with a neuromuscular disorder why don’t you check out one of our chapter groups.  Currently we offer chapter meetings monthly in Toronto, Ottawa, London and Windsor.  We also offer a Parent Child Networking group in Hamilton.    It is a great place to meet other families and access presentations on various topics from summer camps, to physiotherapy to government programs that offer support.

As you can see, we in the services department are very busy with education, information, equipment, support and advocacy.  Hopefully I have provided a little glimpse of all the supports and services available, however as always we would love to have the chance to speak to you.  Whether you need system navigation support, equipment support or just support or information in general we would love to help.  If you would like to contact us please feel free to call us at 1-866-687-2538 ext 160 or locally at 416-488-0107 or email me at karen.dunbar(at)muscle.ca.

Oscar’s Roadhouse Event – September 15, 2012

The Peel Region Walk for Muscular Dystrophy has become an annual event for the Basta family, one that Kim and Ashley look forward to year-round. The mother-daughter duo have been co-chairs of the volunteer planning committee for the last four years and attend the Walk with their family and friends in tow.

Both Kim and Ashley, along with other members of their extended family, are affected by Charcot-Marie-Tooth Disease and understand firsthand the importance of community support. “Muscular Dystrophy Canada has given such wonderful support to my family and me that I wanted to say thank you. There isn’t a whole lot of awareness out there regarding muscular dystrophy… so the Walk is a great way to give back and for the entire community to get involved,” said Kim.

Now they have taken a new approach to raising funds in support of their team at the Walk. Last year, rather than asking friends and family for donations, the Bastas had the idea of hosting an event at a local restaurant to raise funds instead. Teaming up with Oscar’s Roadhouse in Brampton, the family hosted a successful evening of fun and fundraising. “Oscar’s has great food, live music, is accessible and most importantly has an energetic staff willing to help in any way they can,” said Kim.

Due to last year’s success they have decided to do it all again! Attendees can look forward to another night of great music, prizes, giveaways and much more in addition to supporting a worthy cause that is close to the family’s heart. This event will support the Bastas’ fundraising efforts for the 2012 Peel Region Walk for Muscular Dystrophy.

The event will be taking place on Saturday, September 15, 2012 at Oscar’s Roadhouse in Brampton. Festivities begin at 7:30 pm. Join in the fun and help make muscles move! You can email walkformusculardystrophy.on(at)muscle.ca for more details.

Importance of sport and inclusive community from a Mom’s point of view

On August 29th the London 2012 Paralympic Games opened and we are all excited to cheer on our 145 Canadian athletes competing.  I read an article about Canada’s need to recruit more Paralympic athletes to keep reaching the podium.  While a larger pool of athletes will make us more competitive, it was this comment in the article that struck a chord with me. “What I’ve noticed in wheelchair sport is the improvement of everybody’s everyday life skills,” he explained. “We have guys coming into our sport that have trouble transferring to chairs, getting in the bathtub and they just learn tricks of the trade from the other guys, things to make life easier. I’ve seen their lifestyles improve tremendously over the years.”

Ben Tumack met Danielle Peers for the first time on a warm summer morning in July 2005 at a sport camp for children with disabilities.  Ben had only received his first wheelchair a few weeks prior.  At that time Danielle was in full training mode preparing for the World Championships following a bronze medal performance in Athens in 2004, and was preparing to move to France for a year to play wheelchair basketball professionally with a French Men’s team. What Danielle did that morning was to mentor a young aspiring athlete to find a way to:

1. Be active in a way that HE could be active

2. Be part of a team – something he had always desperately wanted

3. Create friendships that will last a lifetime

4. Find confidence in the things he CAN do and improve

5. Keep on dreaming!

As a parent, I have seen the positive affects of being involved with the wheelchair basketball community in particular these past seven years not just for Ben, but for our whole family. In Canada, ALL are welcome to play wheelchair basketball and because of that the community is tight and inclusive and caring. Siblings, parents and friends of athletes with a disability are teammates, so teammates instinctively understand the unique things that make each person a strength to the team. The able-bodied players (the AB’s) are valued, but no more than those with less physical function because ALL are needed to make the best strategy to win. And even if an individual’s strength lies nowhere near the basketball court it is valued – perhaps an individual’s strength is to welcome all, to show the value of a friend, or to cheer everyone else on. Not necessarily physical in nature at all, but no less important.

As new physical challenges present themselves through declining health, or through injury or scheduled surgery related to disability, a strong group of people are there to support the athlete and the family through this tough time – and on the other side, to cheer and applaud when the positive and amazing things happen in life. Some of our best friends are the athletes, officials, and parents-of-athletes we have met through a sporting community – a place to belong…a family.

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.

Family affected by muscular dystrophy receives support for their mobility equipment needs

For Immediate Release

TORONTO-September 4, 2012-September is Muscular Dystrophy Awareness Month, which is an important time for Jeremy and Kira Dixon, whose two children are affected by a rare form of muscular dystrophy.  Their six year old son Nevan and three-year-old daughter Ella have special needs when it comes to equipment.  Wheelchairs and other mobility devices have to grow along with them.  Because muscular dystrophy is a progressive disease, over the years children need new equipment to help them stay as independent as possible.

“Before my children were born, I took walking, running, and movement for granted.  Now, I know that mobility is an amazing gift that changes lives.  That may sound like a cliché, but that’s the reality for my kids and for all the children affected by muscular dystrophy,” Kira explains.  The Dixons, along with other families, look to Muscular Dystrophy Canada for financial assistance made available through the equipment program as well as support and services gained from staff and resources.

Through Safeway Mobility Grants, which are facilitated through Muscular Dystrophy Canada, both Ella and Nevan use a Kidwalk, which is a device that allows them to stand, move independently, and build their strength.  Playing tag and ice-skating are only two of the activities Ella and Nevan can now enjoy using this wonderful device.  Jeremy says, “One of the unfortunate challenges about muscular dystrophy is that it can rob children of their ability to walk, run and play.  The equipment gives the kids a sense of independence and inclusion, which is a huge psychological win for our children.  Muscular Dystrophy Canada is a big help to families like mine.  They walk beside us and speak up for our children.  Equipment is very expensive, but the organization is there to help us as our kids’ needs change.”

Neuromuscular disorders affect over 50,000 Canadians including children and youth, families, adults and seniors.  There are over 150 different types of neuromuscular disorders supported by Muscular Dystrophy Canada, and there is currently no cure.  Visit www.muscle.ca/awareness to learn more about how you can spread the word.

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About Muscular Dystrophy Canada (www.muscle.ca)
Muscular Dystrophy Canada is a not-for-profit organization whose mission is to enhance the lives of those affected with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well funded research.  Muscular Dystrophy Canada’s dedicated volunteers, staff and community partners across the country raise funds to enhance the lives of those affected by over 150 different kinds of neuromuscular disorders.
From coast to coast, Muscular Dystrophy Canada delivers a variety of programs within five key areas of service: Education; Information; Advocacy; Support; and Equipment. 

 

Media Contact:

Berta Mascarenhas

National Manager, Marketing and Communications

Muscular Dystrophy Canada

Tel: 416-488-0030 ext 158

Email: berta.mascarenhas(at)muscle.ca / Twitter / Facebook

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