Volunteers win New Brunswick Provincial Disability Awareness Award

The Disability Awareness Week Executive Committee recently announced the winners of the Disability Awareness Week Provincial Awards at various events held during the Week. These awards honour those who have made significant efforts to improve opportunities for persons with disabilities to fully participate in their communities and lead more independent lives.

The Awards were first established in 1988 and have been considered very prestigious by the disability community.

This year, four winners were selected: Dean & Vicki Mullin of Saint John, Nicole Ward of Moncton, Robert Melanson of Dieppe, Student Council of Mathieu-Martin High School.

“The Committee was very pleased with the quality and quantity of nominations received this year for consideration,” said Christyne Allain, Co-chair of the Disability Awareness Week Executive Committee. “Selecting winners for the Provincial Awards is always challenging as several other nominees were also deserving of recognition.”

Disability Awareness Week was held from May 27th – June 2nd with the theme “Ready and Able to Work!”  Learn more about Disability Awareness Week.

Dean and Vicki Mullin are true leaders who work tirelessly to help people with disabilities in the Greater Saint John region.

After meeting in 2004, Dean became involved with the Fundy Muscular Dystrophy Chapter in Saint John. As a person living with Muscular Dystrophy, Vicki was already an active volunteer with the group. She opened Dean’s eyes to the many challenges and frustrations that people with disabilities have to go through each and every day. They continue to be involved in many fundraising events, and group activities to raise much needed funds and awareness for the group.

In 2008, they joined the KV Committee for Disabled Persons. In 2009, Dean became Chair of the committee, and was involved with fundraising initiatives and public awareness for the committee. Vicki took on the role of Secretary and was responsible for all communication for the committee, along with coordinating the scholarship program, fundraising events, and the school outreach program. Their dedication and commitment to this committee has lead to many successful outcomes, including: enhanced services and programs, a more accessible community, and a greater sense of inclusion for everyone.

Congratulations to Dean and Vicki, and their fellow winners, on this great honour!

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Top 7 Reasons to register with Muscular Dystrophy Canada

1)      Free and Easy: Registration is completely free! It is as easy as filling out a registration form and having a doctor confirm your diagnosis.

2)      Helpful Information: At the time of registration, you will be sent an information package which contains disorder specific information, as well as any local Chapter and event details for your area. We’ll also keep you informed by sharing research news and other happenings through our e-newsletter and regional communications.

3)      Personal Service: Within a month of receiving your info package in the mail you will receive a phone call from a Services staff member to follow up on any questions you may have.  Also, as a client you can reach out to our local Services for support and guidance with various issues. For example, recently, our determined staff have assisted individuals to access affordable housing, obtain funding for respite and attendant care, advocate for appropriate community services, and so much more. To find your local Services staff, click here.

4)      Access to Services: As a client you have access to the many services provided by Muscular Dystrophy Canada — you can apply for assistance from the Equipment Program, attend one of our educations workshops or health information days with interesting speakers, get reliable information about neuromuscular disorders, and help finding the right community services to meet your needs.

5)      Someone on Your Side: Muscular Dystrophy Canada’s caring staff and volunteers are here to help you find the answers and to support you through your journey.  Perhaps there isn’t a neuromuscular specialist in your area and you want advice on finding one, or you aren’t able to work anymore and need assistance with the paperwork involved in that process.  If you have an issue, we can assist in finding the best resolution.

6)      Peer Support: Being a client offers you many opportunities to gather with other people with neuromuscular disorders and their families.  Clients can get together at an Information Day or a Chapter meeting or a fundraising event like the Walk for Muscular Dystrophy; gathering with others who understand living with muscular dystrophy or being a caregiver can bring hope and comfort, especially to those who are newly diagnosed.

7)      It’s up to you: What do you need from Muscular Dystrophy Canada? There are many reasons to register with our organization; every individual is different and sometimes a new challenge or question comes up.  We are committed to improving the lives of people with neuromuscular disorders.  Services staff are dedicated, caring and eager to assist in whatever way possible.

Register today for free with Muscular Dystrophy Canada!

Day in the Life: Lana (National employee)

Lana Milley is the Web Communications Assistant in the National office of Muscular Dystrophy Canada.  Lana moved from her native Russia four years ago.  In Russia, Lana earned a university degree in cultural studies and took courses in graphic design, which allowed her to work from home for several large companies and an accessibility non-profit.  Lana has Limb Girdle Muscular Dystrophy. She uses a wheelchair, and finds Canada to be much more accessible than Russia.  Lana became a member of the Toronto Chapter when she arrived from Russia, which is where she connected with staff at the National office and began volunteering.  The volunteer position became a part-time job that keeps Lana extremely busy.

Tuesday, March 20, 2012:

8:30 a.m.

Lana is ready to go to the Muscular Dystrophy Canada office after getting a little help from an attendant to prepare for the day.  Lana takes WheelTrans to work, so she waits for the vehicle to arrive. WheelTrans must be booked 24 hours in advance and the ride can be longer on the days when other WheelTrans users are picked up along the way.  Lana is very glad to work for Muscular Dystrophy Canada because she enjoys web design and interactivity.  Getting the job was a great opportunity for her as she didn’t have any work experience in Canada.  Lana also enjoys working for the organization because it offers an accessible workspace and flexible hours, although she is kept incredibly busy during her work hours!

10:30 a.m.

After arriving to work, Lana goes to the weekly Marketing meeting, where the five team members discuss what projects are being worked on and she updates the team members through discussions about new ideas or campaigns.  Lana keeps the team updated about what she is working on that week.  Lana has great ideas for design and promotions, and is an incredibly important member of the team by sharing her perspective as an individual affected by muscular dystrophy.  Her opinions are invaluable in the development of marketing and communications concepts.

1:00 p.m.

Lana keeps busy during her 10 a.m. to 4 p.m. work day by making all updates on the organization’s website, working with TYPO3 and Adobe Creative Suite, and designing the e-blast and format of move it!, the digital newsletter.  Sometimes Lana feels pressure from the language barrier, as she has only been speaking English for four years, but her verbal and written skills are incredibly advanced for a language that is still very new to her.  Lana consults with the IT manager, Errol, while addressing technical issues and creating new webpages.

4:00 p.m.

Lana finishes up for the day, and sets an email reminder for staff that she will return to the office on Thursday to continue working on her many projects.  She waits in the lobby until WheelTrans can pick her up to go home, which will be between 4:15 and 4:45 p.m.  Lana enjoys using her knowledge of  HTML and CSS codes for websites, graphic design and working on promotions at Muscular Dystrophy Canada, especially since she is assisting with supporting individuals and families with neuromuscular disorders.

Volunteer Committee Member can’t wait for local Walk for Muscular Dystrophy

This year I am really looking forward to participating in the 2012 Durham Region Walk for Muscular Dystrophy. As a Canadian living with Becker’s Muscular Dystrophy I support the efforts of Muscular Dystrophy Canada. I first joined my local Walk for Muscular Dystrophy in 2010 and ever since it has become the one event I look forward to the most every year.

What I enjoy the most about being involved in my local Walk is how it helps to unite those of us affected by Muscular Dystrophy. It is also a great place to meet new people and it helps me a lot knowing that I am no longer in this all alone. This is why I am so glad to be a part of my local Walk. It’s all about joining together with our family and friends to raise money to help fund research and provide mobility equipment to those who need it. I enjoy the event so much that this will be my second year on the Durham Region Walk for Muscular Dystrophy planning committee. The best part is being involved in the planning of a community event that is so close to my heart. This is why I spend most of my time encouraging local businesses to join us in raising funds for such a worthy cause.  Over the last few years of being involved with the planning committee I have learned how important this event is to those who live in my community. I am sure I am not the only one who looks forward to this event every year. When it comes down to it, it’s the one time of the year that I can join with others in my community who share a common goal and that’s to one day find a cure for all forms of Muscular Dystrophy.

What I love the most about the Walk is the ability to be a part of a team. Creating a team is one of the best ways to get people excited about the event and more importantly it goes a long way in helping us raise awareness in our communities. When it comes to my involvement in my local Walk it really means a lot to me when my family and friends join me as well. But I also enjoy the opportunity of meeting others and joining together to make a difference in the lives of those with neuromuscular disorders. In 2012 I cannot wait to join my local Walk for Muscular Dystrophy.

Register or donate to the Walk for Muscular Dystrophy.

Brad Miller is a 36-year old freelance journalist living with Becker’s Muscular Dystrophy, a condition which limits his ability to walk and gets progressively worse over time. He writes a personal blog, My Becker’s Story, to help raise awareness of muscular dystrophy. Also read his personal story.

Fundraiser pays tribute to her nephew by challenging herself

Many people have heard the story of Mitchell Wilson, who took his life last September.  The 11 year old boy had muscular dystrophy and was a victim of bullying, but in the wake of tragedy many people have rallied to create memorable tributes to this young man, including the Pickering Family of Schools raising awareness and almost $20,000 during their i AM WHO i AM campaign.

Mitchell’s aunt, Sarah, has chosen to honour the memory of her nephew with a 10KM Run for Mitchell.  The event will be held May 26th during the Race Weekend in Ottawa, ON.  Sarah’s goals for her own run are “to raise awareness in schools, to encourage others to show empathy, and most importantly, to give people with muscular dystrophy hope. Hope of a longer, stronger, better life. These things are already happening through many of the programs Muscular Dystrophy Canada has, and it is important to me to support them in these efforts.”

On her fundraising page, Sarah shares the story of inspiration that led to her to decide to train and run 10KM in memory of Mitchell.