News – Page 12 – Muscular Dystrophy Canada

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Have you ever heard of Giant Axonal Neuropathy (GAN)? Probably not. It’s a really rare neuromuscular disorder.

Hi! My name is Jordan and I’m 9-years old. When I was three and a half, a doctor told me I had GAN. My family had no idea what this meant. But the doctor told us that my nervous system is slower and doesn’t work as well as other kids’.

When I was little, I had trouble standing up and walking. At first, my parents thought I was just clumsy. I don’t remember this very well, but my mom says getting my diagnosis was like a never-ending road.

It took two whole years to figure out what was happening to me. When they finally found out about my disorder, my mom says it felt like she was kicked in the gut.

If you give a gift today, scientists can find out more about rare disorders to help people, like me. And today, your gift will go two times as far because a generous donor has agreed to match all gifts to my letter up to $25,000.

Did you know there are over 160 different kinds of neuromuscular disorders? That’s a lot. I have one of the really rare types. And there are lots of other people with different rare types too! Thankfully MDC is here to help people no matter what type they have!

Will you give a gift today so families like mine can get the help they need?

When I was 4-years-old, I needed a walker. Then when I turned five, I got my first wheelchair. Later, MDC helped me get a cool new power wheelchair. I’m really lucky, because I have donors, like you, to help me. But there are a lot of other people with rare disorders who need help, too.

It’s great that we know what my disorder is so that I can get the help I need. Many kids aren’t able to get diagnosed.

My disorder never stops me from having fun! I always wanted to learn how to dance so my mom signed me up for dance classes. She didn’t want to wait because one day I might be in my wheelchair full-time and dance classes would be very different.

Sometimes, my family needs help. If I need a new wheelchair or something else to help me, my mom just picks up the phone and calls MDC. Sometimes she talks to them for a long time, but she always seems happy.

Donors like you help make moms and dads feel happy, and less angry and sad. Right now, because of a special donor, your gift will help even more people! Will you give a gift today?

There are so many different types of disorders. But everyone should be able to get the help they need! MDC supports research, advocacy and helps families like mine get support and equipment—like my walker and wheelchair! When you donate to MDC, it really helps. We are so lucky to have you.

By giving a gift, you give me and families all over Canada HOPE for the future. I’m counting on you to give a generous gift today so you can help others live their best life.

Thank you for helping kids like me keep on dancing!

Jordan Gagnon

P.S. A generous donor has agreed to match the gifts from my letter! How awesome is that? They will match up to $25,000. Which means we can help so many other families. MDC supports research for treatments and earlier diagnosis and supports families impacted by ALL neuromuscular disorders, even the really rare ones—like mine!

Muscular Dystrophy Canada appoints new CEO

For immediate release, September 11, 2020 The Board of Muscular Dystrophy Canada is pleased to announce the appointment of Stacey Lintern as Chief Executive Officer, effective September 9, 2020.

Stacey has been with Muscular Dystrophy Canada since 2012 and has been acting as the interim-CEO since mid-April, 2020. She has extensive experience in the not-for-profit sector and has worked as a senior manager in large health organizations and in government, where she managed organizational development, strategic planning, stakeholder relations, partnerships, and mission delivery. During her time with MDC, Stacey has held a range of senior positions. Before taking on the role of CEO, she was the Chief Operating Officer.

Stacey has built an incredible reputation over the last 20+ years working in this field. She has worked with many non-profit boards, helping to build their capacity to thrive and increase their impact.

Stacey knows our clients, their families and the caregiver community. She has developed successful and enduring relationships with many of our key stakeholders and partners. We believe that Stacey’s leadership, skills, talent, her passion for MDC and for the work we all do will help drive the organization forward as we navigate our way through many of the challenges related to COVID-19 and beyond.

Through her visionary leadership and strong commitment to achieving organizational goals, Stacey maintains a focus on maximizing the potential of MDC’s clients, staff and our diverse group of stakeholders and supporters. In both words and actions, Stacey exhibits a clear dedication to building a culture of empowerment, respect, trust, accountability and innovation.

“I am extremely honoured to serve as MDC’s CEO. I am committed and excited to support the neuromuscular community, face the many challenges, lead and work with our dedicated staff, volunteers, donors, partners and many supporters to deliver our critical mission objectives. I know that people are counting on us to make a difference, and we can”.

Stacey started her career in the Nursing field and made the transition to the disability and health sectors with a focus on independent living, community integration and patients directing their care. Stacey is a graduate of York University Executive Leadership Program and the University of Toronto Post Graduate Executive Advanced Business Management Program. And, she looks forward to continuing her education as she enters into the Canadian Health Executive Program offer through the University of British Columbia.

The Board of MDC is committed to doing everything we can to continue to support our clients and their families through this time, and to advocate on their behalf. We are working closely with and fully support Stacey and the entire MDC team in their efforts to ensure the organization remains strong and viable.

For further information, please contact:

Stacey Lintern
Phone: 647-284-8706 or Email : stacey.lintern@muscle.ca

Thank you,
Donna Nixon,
Chair of the Board of Directors,
Muscular Dystrophy Canada

ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, explore our website or call our toll-free number at 1-800-567-2873.

Important Update on Phone Solicitations

Muscular Dystrophy Canada does not use telemarketing services. You can support Fire Fighters and help them Fill the Boot for Muscular Dystrophy Canada and the individuals and families impacted by neuromuscular disorders by going to filltheboot.ca. For Donations $20 or more you will be emailed a tax receipt.

STATEMENT REGARDING PHONE SOLICITATIONS

Several years ago, the Canadian Fire Fighter Curling Association (CFFCA) retained a telemarketing company to assist in fundraising for their annual curling event. A portion of the funds raised in past years were donated to MDC.
Muscular Dystrophy Canada can confirm a campaign soliciting donations for the Canadian Fire Fighter Curling Association has begun, seeking donations that support the Canadian Fire Fighter Curling Association.

We have received complaints regarding the tone and approach of solicitation calls. We have brought these to the attention of the President of CFFCA.
Should you have any concerns or questions please contact the Canadian Fire Fighter Curling Association directly at cffca.ca.

We sincerely thank all of our generous supporters for making our work possible. Again, to help Fire Fighters #filltheboot go to filltheboot.ca.

MDC Urgently Needs Your Help

Dear Friend,

I truly hope this letter finds you and your loved ones safe and well during these uncertain times.

I am reaching out to request your support. As a result of COVID-19, Muscular Dystrophy Canada (MDC) has experienced a significant decrease in our fundraising revenue. As an organization that does not receive government funding, MDC relies on generous donors and supporters, like you, to meet the diverse and ever-changing needs of our clients.

Your support has enabled MDC to deliver its critical programs and services, like our equipment funding program, to thousands of clients across Canada for over 66 years. To ensure the safety of all, we have had to make the difficult decision to cancel and or postpone in-person fundraising events. As a result, MDC has experienced a decrease in revenue by over 60 per cent in our first quarter.

Therefore, we’ve had to decrease funding for our equipment program by 40 per cent meaning fewer clients are getting what they need. Our clients need us now more than ever as they have limited resources and are coping with issues related to COVID-19.

That’s why we’re hoping you will consider making a special donation today, if you can.

One such client who needs help is Courtney White. Courtney is a single mom of three children. Her two sons have Duchenne Muscular Dystrophy, and she desperately needs a bathroom lift for her home. She shared with us that, “This pandemic has been incredibly hard for our

Harley and Ayden, with their mom Courtney and sister Keira, need your support to access critical, life-changing equipment.

family. Right now, I have to lift my oldest son, Harley, in and out of the bathroom. He weighs significantly more than me. Having a ceiling lift from the bedroom to the bathroom would mean more independence for the boys, less physical stress on me and more time to spend together as a family. But, due to COVID-19, funding has been delayed significantly.”

Sadly, the crisis is far from over. You can help us continue to fund critical equipment for people impacted by neuromuscular disorders. We urgently need your support. If you are able, please consider donating today.

MDC has almost 100 people waiting for critical equipment. As you may know, often government doesn’t fund or fully cover the high costs of essential equipment like wheelchairs, ramps, lifts and respiratory aids. For some this means not being able to live in their home safely. For others, like Courtney’s family, it means emotional and financial strain in addition to health and safety concerns for caregivers.

Courtney also shared how thankful she is for the support that donors make possible.

“MDC always does everything they can to help us. For a single parent in this situation, securing financial support for equipment would take a huge weight off my shoulders, both literally and figuratively. Without you, I can’t get the equipment I need for my sons.”

If you are in a position to donate, I hope you will consider doing so today. You will be helping Canadians impacted by neuromuscular disorders access the critical equipment and support they need to live their best lives.

Thank you for being there when we need you most and continuing to support those impacted by neuromuscular disorders. I hope you have been safe and healthy during these uncertain times. If you have been impacted by COVID-19, you are in our thoughts.

With deepest gratitude,

Stacey Lintern
Interim CEO
Muscular Dystrophy Canada

P.S. At a time when our ability to raise funds to support the neuromuscular community has been diminished, we are experiencing a significant increase in requests for our services. You have MDC’s commitment that we’ll continue to do everything we can to support our clients and their families. But, in this period of uncertainty, we really need your help.

New Partnership Offers Access to Shared Decision Making Support in Ontario

New partnership offers access to shared decision making support for paediatric clients and their families in Ontario

For Immediate Release – June 23, 2020

Ontario, Canada – Muscular Dystrophy Canada (MDC), Children’s Hospital at London Health Sciences Centre (LHSC), and Children’s Health Foundation have entered into a partnership to offer a pilot project providing access to an innovative service that helps paediatric patients and their families make informed decisions throughout their care journey. Through this partnership, Ontario-based MDC clients up to age 18 and their parents and caregivers will have access to virtual Shared Decision Making coaching from Children’s Hospital via Ontario Telemedicine Network (OTN) Technology.

Shared Decision Making is the process where health professionals and patients collaborate on medical decision-making with a more structured method that takes into account both the best evidence and patient values. Health-related decisions can affect the overall well-being and quality of life of both the patient and their family members, and Shared Decision Making has been shown to reduce these psychosocial stressors. The decision coaching provided by Children’s Hospital at LHSC is particularly innovative because it involves unbiased decision support from outside the patient’s circle of care, filling a unique gap that is present in models where only practitioners are directly involved in the decision coaching. For children and youth with neuromuscular disorders and their families, this innovative model becomes all the more valuable as there are many challenging medical and non-medical decisions that must be made over a patient’s health-care journey.

“We are so excited about this collaborative partnership and the benefits our Ontario clients will gain from the Shared Decision Making program. Having support from a Decision Coach will help alleviate some of the fear, stress and pressure parents of children with neuromuscular disorders often experience,” says Stacey Lintern, Interim CEO, Muscular Dystrophy Canada. “This program will also support clients and families in gaining knowledge, evaluating benefits and drawbacks and clarifying priorities which are all integral to a comprehensive approach to making challenging medical decisions. MDC Service Specialists are happy to be able to offer this program as an additional resource to clients as they work with them to navigate and access critical supports.”

The Shared Decision Making partnership is in line with MDC’s commitment to client and family-centred care. MDC currently takes a client and family-centred approach to delivering its mission across Canada by offering a Systems Navigation program, which provides critical support not only in ensuring clients have access to the right resources but also by playing a key role in providing education, developing networks and connections, working in partnership to address barriers and share resources, enhancing life skills and self-coping strategies and embracing inclusion. The Shared Decision Making program includes education, tools, strategies and information. The partnership will provide MDC clients with a seamless process, allowing them to access the right resources at the right time.

“We are incredibly pleased to be able to partner with Muscular Dystrophy Canada to extend our decision coaching service to other patients and families across Ontario,” says Dr. Craig Campbell, Interim Chair of Paediatrics at Children’s Hospital at LHSC. “The Children’s Hospital team, with the support of our Children’s Health Foundation, has been able to develop a unique expertise in this area over the last two-years, and engaging in this new partnership is a rewarding recognition of that. We look forward to furthering our support of Ontario patients and families as they make important care decisions about their child’s neuromuscular disorder.”

The province-wide pilot project aims to collect data that will demonstrate the need for broader investment into a systemic-approach to the availability of decision coaching for all patients and families impacted by neuromuscular disorders across Canada.

Access support now.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit  www.muscle.ca  or call our toll-free number at 1-800-567-2873.

ABOUT LONDON HEALTH SCIENCES CENTRE

London Health Sciences Centre has been at the forefront of medicine in Canada for 145 years and offers the broadest range of specialized clinical services in Ontario. Building on the traditions of its founding hospitals to provide compassionate care in an academic teaching setting, London Health Sciences Centre is home to Children’s Hospital, University Hospital, Victoria Hospital, the Kidney Care Centre, two family medical centres, and two research institutes – Children’s Health Research Institute and Lawson Health Research Institute. As a leader in medical discovery and health research, London Health Sciences Centre has a history of over 70 international and national firsts and attracts top clinicians and researchers from around the world. As a regional referral centre, London Health Sciences Centre cares for the most medically complex patients including critically injured adults and children in southwestern Ontario and beyond. The hospital’s nearly 15,000 staff, physicians, students and volunteers provide care for more than one million patient visits a year. For more information visit www.lhsc.on.ca

ABOUT CHILDREN’S HEALTH FOUNDATION

Children’s Health Foundation, founded in 1922, raises funds to ensure that children and their families across Western Ontario receive the best possible care and the most possible hope when faced with a life-threatening or life-limiting diagnosis. By funding equipment, programs and research at Children’s Hospital at London Health Sciences Centre, Thames Valley Children’s Centre and Children’s Health Research Institute, Children’s Health Foundation ensures better childhoods for kids facing serious health issues, and hope, relief and support for those who love them. To learn more, visit childhealth.ca.

Media Contact

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

Feel Good Friday Client Spotlight: Willms Family

For this week’s #ClientSpotlight, we are excited to feature the Willms family! During COVID-19, parents Josh and Alisha have been keeping busy by creating a more accessible bathroom for their son Emmett to use and grow into. They built a roll-in shower, and an accessible sink to give Emmett more independence and safety in the bathroom.

Their main focus is for Emmett to be independent, and to do the things he wants and needs to do without limitations. MDC was happy to provide them the support they needed to make this all possible.

This time still remains uncertain for many Canadians and families impacted by neuromuscular disorders. If you require support, learn about our programs and services, or contact a Service Specialist in your area. We are happy to provide guidance and support.

The Willms family is also spending lots of time outside to enjoy the spring weather. They have been going on lots of walks together and even planted a garden. On rainy days, Emmett has been using his imagination to turn the dining room table into a pirate ship. He uses his stuffed animals as his pirate crew and the whole family searches the house for treasures together.

Thank you for sharing with us, Willms family! We love hearing your stories about how you are keeping busy and how you are using your imagination to have fun!

Our Systems Navigation program is designed to support clients in all areas of their non-medical needs including: funding equipment to improve daily life, providing emotional and educational support, and ensuring access to vital resources and support systems.

We understand that clients want to live life on their own terms. Our program provides them with the right resources to build confidence, and to fulfill their dreams, while ensuring they have increased independence.

Learn more about our programs and services.

Feel Good Friday Client Spotlight: Ken M. Kramer

For this week’s #ClientSpotlight, we are proud to feature Ken M. Kramer, QC. Ken is the Principal & Senior Associate Counsel for KMK Law, and was also the first person with a neuromuscular disorder to lead Muscular Dystrophy Canada as Chair of the Board of Directors.

Ken is an advocate for accessibility and inclusion both in the province of British Columbia and nationwide through various initiatives.

Ken has, and continues to work closely with the media, lawyers across the country, disability groups in British Columbia, senior members with the Ministry of Health, and with the government. A big part of his work is focused on advocacy and helping to develop important policies associated with healthcare and individuals living with disabilities.

“Advocating for people with disabilities is not just something I do as a part of my career—but because I believe in advocacy and promoting inclusion,” says Ken. “I am a strong advocate for myself, and there are others like me. But some don’t have the ability to speak up, so a lot of the things I do are for them.”

Are you interested in advocating in your own community but you’re not sure where to start? Ken shares some advice on how to get started:

“It has to be something that you genuinely believe in,” says Ken “Something you can articulate your thoughts around. It doesn’t need to be sitting with ministers or premiers, but it can result in other methods, like getting associated with an organization that shares your vision or meeting with your MLA—or even writing an opinion piece for your local paper. Everything has an impact.”

Another piece of advice that Ken suggests is to think strategically. “Try not to complain when you provide an issue,” says Ken. “But also come up with a solution. Come up with different options. Find a solution that also has an economic advantage.”

Thank you, Ken, for continuing to use your voice to promote accessibility and inclusion. We can’t wait to see what you will do next to help support individuals living with disabilities.

At MDC, advocacy plays an incredibly important role in delivering our mission. Learn more about the advocacy work that MDC currently supports, and how you can get involved.

New partnership will provide cough assists for adults in British Columbia

Vancouver, British Columbia – British Columbians living with a neuromuscular disorder will soon be able to breathe easier thanks to a partnership between Muscular Dystrophy Canada (MDC) and Technology for Living (TFL).

The partnership will provide cough assists for adults in BC, who do not have access to this critical piece of respiratory equipment, and to evaluate their health outcomes. Currently, provincial funding for cough assists is only available for children up to the age of 18.

Neuromuscular disorders can contribute to tremendous respiratory challenges; persons impacted are prone to infections and pneumonia. Cough assists can help to prevent these types of complications and improve quality of life. Best practice is that individuals with a neuromuscular disorder that have respiratory involvement start using a cough assist at approximately eight years of age. Unfortunately, once a person reaches adulthood, funding in British Columbia is limited and most people don’t have the financial means to purchase a cough assist themselves.

TFL’s Provincial Respiratory Outreach Program (PROP) provides education, equipment and respiratory assessments for people living with neuromuscular disorders in BC. Under this new partnership, adults who are registered with MDC can apply for a cough assist through PROP.

“It’s thanks to the support of donors, fire fighters, event participants and our family of chapters, that MDC is able to participate in this partnership with PROP to provide cough assists and evaluate the health outcomes of the individuals receiving this vital equipment,” said Stacey Lintern, Interim CEO, Muscular Dystrophy Canada.

“This partnership will help to address the respiratory support needs of the neuromuscular community in British Columbia. However, this funding will only address a small portion of the need,” continues Lintern. “Persons impacted with neuromuscular disorders need access to cough assists; and, we’re committed to working with PROP and the provincial government to provide access regardless of age.”

“As more people with health conditions are living and working at home, it is important that health services meet those needs. In this particular need, it is supporting the basic act of coughing to clear secretions, to keep the lungs healthy,” says Esther Khor, Registered Respiratory Therapist, Manager of PROP. “PROP is excited to collaborate with Muscular Dystrophy Canada, to support the trialing of cough assists in the home. The goal is to learn, identify and support solutions for individuals with neuromuscular conditions. Together with Muscular Dystrophy Canada, we are taking a step together to keep respiratory health a priority.”

ABOUT MUSCULAR DYSTROPHY CANADA (MDC)
Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. Learn more about MDC online, or call our toll-free number at 1-800-567-2873.

ABOUT TECHNOLOGY FOR LIVING
Technology for Living (TFL) works with people who have severe physical disabilities and helps them to live as well, and as independently as possible. Their Provincial Respiratory Outreach Program provides education, equipment and therapy for people living with neuromuscular disorders or chest wall restriction. To learn more about TFL, please visit technologyforliving.org/ or call 1-866-326-1245.

MEDIA CONTACT INFORMATION:
Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

Fire Fighters Fill the Boot Campaign Goes Virtual

For Immediate Release. May 5, 2020

Toronto, Ontario – For an incredible 65 years Fire Fighters across Canada have helped Fill the Boot. Unfortunately, due to COVID-19, Fire Fighters had to cancel their fundraising efforts this Spring, but the needs of people impacted by neuromuscular disorders can’t be cancelled. MDC still needs to provide critical services and programs to our clients.

Fire Fighters and MDC want to keep the tradition of helping to Fill the Boot going and since Fire Fighters can’t physically be out in their communities asking people to help, we have created a virtual Fill the Boot campaign.

With the help of many supporters, including Owen McGonigal who kicked off the campaign with the first #filltheboot video, we are able to keep Fill the Boot efforts going this year.

“I look forward to seeing our local Fire Fighters out in the community every year. They are an incredible support and inspiration to the neuromuscular community,” says Owen. “I challenge all of you to join me and post your own video, make a donation and challenge your friends. Together, we can support Fire Fighters and all Canadians impacted by neuromuscular disorders.”

Supporters can post their #filltheboot video on social media, donate at filltheboot.ca and challenge three friends to do the same! Visit us on Facebook, Instagram and Twitter to see the #filltheboot campaign in action!

“We’re so excited about this campaign and the opportunity to move our fundraising efforts to the virtual world. During such an unprecedented and uncertain time, one thing we know we can always count on is unwavering support from Fire Fighters,” says Stacey Lintern, Interim CEO of Muscular Dystrophy Canada. “Fire Fighters have supported MDC since its inception in 1954, we are incredibly grateful for their continued dedication to our cause and our clients”.

Find out more by visiting filltheboot.ca.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit  www.muscle.ca  or call our toll-free number at 1-800-567-2873.

MEDIA CONTACT

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714