MDC – Page 3 – Muscular Dystrophy Canada

MDC Statement

December 4, 2020

Statement from Stacey Lintern, Chief Executive Officer, Muscular Dystrophy Canada on a Collaboration with Novartis for National Newborn Screening in Spinal Muscular Atrophy (SMA)

“The remarkable story of Aiden Deschamps shared this week by Newborn Screening Ontario and the Children’s Hospital of Eastern Ontario demonstrates the profound impact newborn screening has on the quality of lives of children born with spinal muscular atrophy (SMA). We know that for these children, promising outcomes are possible with a timely diagnosis and early access to care and treatment. We applaud Ontario for recognizing this and being the first province to add SMA to their screening panel.”

“As an umbrella national organization that represents individuals impacted by neuromuscular disorders including SMA, we believe all Canadian babies should have an opportunity to realise their developmental potential. Building upon Ontario’s leadership, we are excited to embark on a collaboration for nation-wide newborn screening collaboration with Novartis Pharmaceuticals Canada Inc., who have committed up to $2 million. This investment coupled with our combined expertise will fuel the goal of making newborn screening for SMA a reality from coast-to-coast.”

“This landmark effort will bring together those with lived experience, medical experts, patient advocacy organizations, governments and other key stakeholders. We are incredibly proud of this important initiative and look forward to working with the SMA community across the country.”

For more information, contact:

Stacey Lintern
CEO, Muscular Dystrophy Canada
Phone: 647-284-8706
Email: Stacey.Lintern@muscle.ca

Don’t Forget Me This Holiday Season

The world is a scary and lonely place right now. Due to the global pandemic, we are isolated from our friends and family. Our routines have completely changed. We aren’t able to do the things we love and visit our favourite places. This is what life is like, every day, for many individuals affected by neuromuscular disorders.

My name is Warren. I’m a husband, a father, an advocate and so much more. I also have Becker’s Muscular Dystrophy. I wanted to share my story with dedicated donors, like you, because you’re having a profound impact on the lives of so many people affected by neuromuscular disorders – in ways that you may not even realise. And for that you deserve much gratitude and thanks.

I was eighteen years old before I was diagnosed. As frustrating, demoralizing and scary as it was to grow up unable to do things and not know why, it made me incredibly thankful when I finally did receive a diagnosis.

I remember being compared to my younger siblings. I was often called lazy. My experience of being treated less than fairly made me the advocate I am today. I’m also dedicated to raising funds for Muscular Dystrophy Canada (MDC), because I know from personal experience that the resources, connections and programs they offer are life-changing. I know these services are only possible, because of gifts from special donors like you.

DONATE NOW

MDC is at great risk of not being able to continue offering these incredible services. Their revenue has drastically decreased during the pandemic, and demand for programs and support services has risen. You have been instrumental in providing these services in the past. Will you consider donating today to ensure individuals, like me, can continue to access the support we need during these challenging times?

The holidays are almost here and people are getting excited and finding new ways to celebrate with their loved ones. For me, the holiday season means snow, increased expenses and further isolation and loneliness.

I hope this holiday season you will remember the challenges many of us are facing.
Because you have the power to give the gift of hope and connection by supporting MDC.

Sometimes I get very angry. I’m angry that my loving wife and wonderful children have
to watch their dad struggle. I’m angry that I can’t be there for them in the ways I want to be. I’m angry that we, the disabled community, so often seem to be forgotten. I can’t deal with the anger and isolation alone. Thankfully I have a friend like you in my corner.

DONATE NOW

Because of you, I am able to participate in MDC’s virtual network meetings. These meetings give me a chance to connect with others who understand my situation and frustrations. It also gives me the chance to help others and be a support system for new friends across the country.

Did you know you were providing a safe, accessible way for individuals affected by neuromuscular disorders across the country to connect with each other, form friendships and reduce isolation? This type of gift is invaluable. But without your continued generous support, these opportunities for connection are at risk.

You have the power to bring people together, to reduce isolation and loneliness and to brighten someone’s day in a meaningful way. Will you make a donation today to spread a little holiday joy?

The financial support, equipment and emotional connections you provide are important every day, but even more so during the holidays. I hope you will make a donation today to make sure no one feels forgotten this holiday season.

Warm regards,
Warren Jones

P.S. Give the gift of joy and connection today. Then if you know someone impacted by a neuromuscular disorder, tell them how you are supporting MDC and encourage them to attend a virtual network meeting. I’d love to make a new friend.

DONATE NOW

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.

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 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

Stacey Lintern appointed Interim CEO at Muscular Dystrophy Canada

For immediate release. April 27, 2020

Toronto, Ontario – The Board of Muscular Dystrophy Canada is pleased to announce the appointment of Stacey Lintern as interim Chief Executive Officer, effective April 22, 2020.

Stacey has been with Muscular Dystrophy Canada since 2012, and has worked in the not-for-profit sector for over 20 years. She has worked as a senior manager in large health organizations and in the government, where she managed organizational development, strategic planning, stakeholder relations, partnerships, and mission delivery. She has held a range of senior positions at Muscular Dystrophy Canada, most recently as Chief Operating Officer.

Stacey is highly regarded by colleagues, clients and stakeholders and her skills and talent will be particularly helpful as the organization navigates the challenges related to Covid-19.
We are committed to doing everything we can to continue to support our clients and their families and to advocate on their behalf.

The Board wishes to thank the outgoing Chief Executive Officer, Barbara Stead-Coyle, who has resigned, for her contribution to the organization.

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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

Stacey Lintern
Muscular Dystrophy Canada
Stacey.Lintern@muscle.ca
647-284-8706
1-800-567-2873 x1104

Muscular Dystrophy Canada makes the difficult decision to reduce staff

For Immediate Release – April 8, 2020

Toronto, Ontario – Muscular Dystrophy Canada (MDC) announced that they have temporarily reduced their staff by 17 people in positions across the organization, at all levels.

“We considered all our options before coming to this extremely difficult decision. Of paramount importance was our ability to maintain core services to our clients,” commented Board Chair, Donna Nixon. “MDC’s staff are our most valuable asset in this respect. But the very necessary measures to stem the spread of Covid-19 have resulted in the cancellation of key fundraising events, until further notice. Balancing service to our clients with the financial sustainability of MDC has been uppermost in our minds.”

MDC will continue to deliver critical programs and services, and our Service Specialists remain available to our clients and families.

“We are committed to supporting our clients and families, volunteers, fire fighters, donors and partners. They are the lifeblood of MDC, and they need our support now more than ever. For staff impacted, we will continue their medical and dental benefits, ensure they have access to our Employee Assistance Program, and help them transfer to the appropriate government programs,” said CEO, Barbara Stead-Coyle. “MDC is a family and we must do all we can to work together during this unprecedented time.”

The Board of Directors is working hand-in-hand with MDC’s Executive Leadership to closely manage MDC’s response to the pandemic. MDC has stepped up online communications to our community, including virtual events such as weekly client support sessions. All information will be posted on our website www.muscle.ca, and through our social media channels.

MDC has also signed onto many sector-wide initiatives aimed at advocating for further financial assistance for health charities and Canadian not-for-profits more broadly. Imagine Canada is currently lobbying the federal government for an emergency stabilization fund for the country’s charities that would include cash grants and interest-free loans.

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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

Important Update on Phone Solicitations

STATEMENT REGARDING PHONE SOLICITATIONS

Muscular Dystrophy Canada does not use telemarketing services.

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.

Barbara Stead-Coyle
CEO