Muscular Dystrophy Canada and Independent Living Canada partner to help lead the development of Canada’s first ever Disability Inclusion Action Plan

FOR IMMEDIATE RELEASE

Toronto, ON – January 27, 2021 – Muscular Dystrophy Canada (MDC) and Independent Living Canada (IL Canada) are partnering to equitably consult with individuals, organizations and stakeholders across disabilities to help inform the development of Canada’s first Disability Inclusion Action Plan (DIAP).

Beginning in January 2022, this 15-month collaboration will both inform the development of the DIAP in advance of its release, and continue to assess and improve the Plan throughout its implementation. The DIAP will focus on reducing poverty among persons with disabilities, getting more persons with disabilities employment opportunities, and realizing the goal of the Accessible Canada Act to achieve a barrier-free Canada by 2040, making it easier for persons with disabilities to access federal programs and services and fostering a culture of inclusion. Our goal is to ensure all Canadians have the opportunity to provide feedback, express concerns, and share their experiences to make this vital action plan as inclusive and impactful as possible.

With over 100 disability organizations invited to collaborate on this engagement process, IL Canada and MDC were selected to co-lead this project with support and funding from Employment and Social Development Canada (ESDC).

“For The Disability Action Plan to make a real impact in the lives of persons with disabilities, it has to be informed by lived experience. I’m grateful that Muscular Dystrophy Canada and Independent Living Canada will be working with the disability community to determine what barriers are still preventing persons with disabilities from participating in society, and how Canada can remove them to create a more equal, inclusive, and prosperous country” says The Honourable Carla Qualtrough, Minister of Employment, Workforce Development and Disability Inclusion.

IL Canada and MDC look forward to leading this process while ensuring representation from within all areas of disability, including racialized and LGBTQ2S+ communities.

“Independent Living Canada is thrilled to be leading this consultation process in partnership with Muscular Dystrophy Canada, the pillar leads, and individuals affected by disabilities from coast-to-coast to coast. This is a once-in-a-lifetime opportunity to ensure that the voices of marginalized and hard-to-reach people affected by disabilities are provided the opportunity to have their voices heard about what should be included in the first-ever federal Disability Inclusion Action Plan,” says Anne MacRae, National Executive Director, Independent Living Canada.

“Muscular Dystrophy Canada is honoured to work in partnership with IL Canada to consult Canadians affected by disabilities and share these experiences in a method that will drive the implementation of the much needed Disability Inclusion Action Plan,” says Stacey Lintern, CEO, Muscular Dystrophy Canada. “This is a vital action plan which will impact each and every Canadian in some way. We look forward to expanding our person-centred approach and ensuring all voices are heard throughout this process.”

MDC and IL Canada look forward to working with Inclusion Canada, Canadian Council on Rehabilitation and Work, Canadian Association of the Deaf, and Eviance who have been designated as leads for the four respective thematic pillars of the DIAP: Financial Security, Employment, Accessible and Inclusive Communities and a Modern Approach to Disability.

“At Inclusion Canada we are extremely excited about hearing from persons with a disability, their representative organizations and stakeholders across the country as the lead on the financial security pillar of the Disability Inclusion Action Plan,” says Krista Carr, Executive Vice-President, Inclusion Canada. “Hundreds of thousands of people with disabilities in Canada live in poverty and this urgently needs to change. We are looking forward to getting started right away.”

“We are pleased and excited at the funding support for this project. We really look forward to working with our partner organizations in building new bridges to hard-to-reach components of the Deaf, Deaf-blind and disabled communities across Canada,” says Jim Roots, Executive Director, Canadian Association of the Deaf.

“The Canadian Council on Rehabilitation and Work (CCRW) recognizes the capability of persons with disabilities, and supports their choices for equitable and meaningful participation in work. We are proud to be a pillar of change and build up the community by sharing our values, knowledge and commitment to Disability Inclusion and ensuring that there is an equitable approach to disability inclusive design,” says Maureen Haan, President and CEO, CCRW. “We are honoured to be involved in the development of the DIAP as the lead agency of the Employment Pillar. We are excited and motived to ensure this project will bring change and a voice to those with lived experience that remain hard-to-reach and marginalized populations with disabilities.”

“Eviance looks forward to collaborating on this important piece of work, and bringing together the knowledge and diverse experiences of persons with disabilities, to strengthen the federal Disability Inclusion Action Plan,” says Dr. Susan L. Hardie, PhD, Executive Director, Eviance.

About Muscular Dystrophy Canada

Muscular Dystrophy Canada’s 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. To learn more about Muscular Dystrophy Canada, please explore our website at muscle.ca or call our toll-free number at 1-800-567-2873.

About Independent Living (IL) Canada

Founded in 1986, Independent Living Canada is a national non-profit association of Independent Living Centres led by and for people with disabilities who promote the Independent Living Philosophy. IL Canada supports the development of Independent Living Centres, and provides education and leadership for its member organizations, partners and communities.

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Media Contact

Heather Rice
Director, Marketing and Communications
Muscular Dystrophy Canada
heather.rice@muscle.ca
902-440-3714

Muscular Dystrophy Canada joins forces internationally to impact greater change at home

October 22, 2021 – Muscular Dystrophy Canada has signed a Statement of Intent with Muscular Dystrophy UK, Muscular Dystrophy Australia and Muscular Dystrophy Foundation of South Africa to help break down barriers for individuals living with neuromuscular disorders, worldwide.

“Our organizations share similar missions and values, and face similar challenges and hurdles. By coming together, we hope to share insights, policies and training to have a greater impact on the neuromuscular communities we support,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

The organizations recognize the need to work more actively on equality, diversity, inclusion and accessibility issues, and hope that more organizations will join them in the future.

“By working together on these issues, and sharing learnings with our partners, MDC will be able to more effectively and efficiently create sustainable change here in Canada, and play a role internationally,” added Lintern. “It has been an incredible experience working with these organizations thus far, and I have no doubt that our combined expertise and knowledge will result in positive changes for neuromuscular communities in the near future.”

 

ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s 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. To learn more about Muscular Dystrophy Canada, please explore our website or call our toll-free number at 1-800-567-2873.

FOR MORE INFORMATION CONTACT:

Heather Rice
heather.rice@muscle.ca
902-440-3714

Recognizing dedication and passion beyond measure

Muscular Dystrophy Canada (MDC) recognizes and celebrates the contributions of individuals and groups who champion our mission with courage, determination, and passion through the Dr. David Green Awards Program. We are excited to announce the list of our esteemed 2021 award winners. These individuals show extraordinary commitment to raising funds, increasing awareness and advocating for the NMD community, supporting continued research, engaging other community members and building positive connections.

The type of compassion and leadership recognized by these awards is personified in Dr. Colleen O’Connell, MDC’s 2021 recipient of the Outstanding Healthcare Partner award. This award is presented to a physician or clinician for outstanding achievements in improving neuromuscular disorder clinical practice and/or who has played a major or lasting role in improving the quality of life of people affected by neuromuscular disorders and their families.

In the past year, Dr. O’Connell has supported MDC’s knowledge sharing and advocacy initiatives. Particularly, Dr. O’Connell supported MDC with gathering and sharing credible and timely information regarding COVID-19 and NMDs. She has advocated on behalf of patients with NMDs to receive prioritization for vaccination. She also presented at our #LetsTalkNMD webinars, and most recently, she is the chair of transition of care in DMD for an upcoming Duchenne conference. She has supported MDC in many ways and is exceptionally knowledgeable, available and willing to support the NMD community in Canada.

“MDC is incredibly grateful to have so many groups and individuals dedicated to supporting our mission and the NMD community as a whole,” says Stacey Lintern, CEO of Muscular Dystrophy Canada. “From giving their time, contributing innovative ideas, sharing their experiences and helping to advance MDC forward in all areas of our Mission efforts, volunteers are the back-bone of our organization. Thank you doesn’t even begin to cover just how appreciative we are of each and every one of you”.

We are so lucky to have such an amazing group of supporters, including Dr. O’Connell, who continue to support our Mission, challenge us to be better and unite the neuromuscular disorder community. Click here to learn more and see a full list of this year’s award winners.

2021 Award Winners

MDC Change Agents 

As we celebrate National Volunteer Week, we are happy to share that the following members for MDC’s Advocacy Advisory Committee have been selected:

Catherine Boivin
Quebec
Profession: Digital Technologies Specialist and Consultant
Connection to MDC: Adult affected by a NMD

Alfred Breton-Pare
Quebec
Profession: Senior CRA; Project Manager; Clinical Research Manager
Connection to MDC: Parent of a child affected by a NMD, MDC Board Member

Emily Hong-Wing Chan, BSc (Hons), MSW (Cand.)
Ontario
Profession: Social Worker
Connection to MDC: Adult affected by a NMD

Dr. Sue Dojeiji MD, Med, FRCPC
Ontario
Profession: Physiatrist-in-Chief, Clinical educator; Neuromuscular Researcher
Connection to MDC: NMD Clinician-Scientist

Susan Jahnke
British Columbia
Profession: Business Owner & Website Manager
Connection to MDC: Adult affected by a NMD

Corrine Kagan, BA (Hons)
Ontario
Profession: Past Senior Program Director (ABI)
Connection to MDC: Adult affected by a NMD

Dr. Colin Kovacs, MD, Med, FRCPC
Ontario
Profession: Family Medicine/HIV Primary Care Physician; Assistant Professor in Internal Medicine at U of T
Connection to MDC: Adult affected by a NMD, Member of NMD4C

Ken Kramer, Q.C.
British Columbia
Profession: Principal & Senior Associate Counsel at KMK Law
Connection to MDC: Adult affected by a NMD

Louis Joseph Lauziere
Ontario
Profession: Past Senior Policy Advisor in Dept of Justice at Gov of Saskatchewan
Connection to MDC: Adult affected by a NMD

Michael Low, JD
Alberta
Profession: Litigation Associate at Fasken Martineau DuMoulin LLP
Connection to MDC: Parent of a child affected by a NMD

Stefanie Marinich-Lee, LLB.
Ontario
Profession: Lawyer, Corporate HR
Connection to MDC: Adult affected by a NMD

Erin Novakowski
Alberta
Profession: Undergraduate student at U of Alberta; Disability Social Media manager; Writer and Contributor for Accessible Housing Canada
Connection to MDC: Adult affected by a NMD

Thu Parmar, B.Sc. Pharm
Alberta
Profession: Clinical Pharmacist; Managed public drug programs at Alberta MoH; Senior Manager of Government Relations & Public Policy at Hoffmann-La Roche Limited (Roche Canada)
Connection to MDC: NMD Industry Partner

Jalee Pelissier
Ontario
Profession: PT/OT Aide
Connection to MDC: Adult affected by a NMD

Kara Reid, BSc OT
New Brunswick
Profession: Occupational Therapist
Connection to MDC: Member of Neuromuscular Clinic, MDC Board Member

Dr. Kerri Schellenberg  MD, MMedEd, FRCPC, CSCN (EMG)
Saskatchewan
Profession: Neurologist and Medical Director ALS Clinic; Neuromuscular researcher.
Connection to MDC: NMD Clinician-Scientist

Erica Vella, BA
Ontario
Profession: Digital Broadcast Journalist with Global News Toronto
Connection to MDC: Family member of an adult affected by NMD

Fatima Vido-Vecchio, B.Sc. PT
British Columbia
Profession: Physiotherapist
Connection to MDC: Member of Neuromuscular Clinic

Elaine Whitmore
Ontario
Profession: Past CEO of John McGivney Children’s Centre
Connection to MDC: Friend of persons affected by NMD; Advocate

We are thankful to all who applied and applaud our new members for coming forward to help us work together towards inclusive policies that reflects and respects Canada’s diversity, values the neuromuscular experience and are accessibility-focused.

We look forward to influencing positive change together! If you have any questions about advocacy, please email advocacy@muscle.ca

Researchers from across Canada join The Tenaquip Foundation’s Walk4MD to raise awareness and funding for neuromuscular disorder community

FOR IMMEDIATE RELEASE April 15, 2021

Toronto, Ontario – For the second year in a row, Muscular Dystrophy Canada (MDC) is bringing the neuromuscular disorder (NMD) community together virtually for its annual Walk4MD, which raises much needed funds to support Canadians affected – and this year researchers are joining the Walk4MD family.

On June 19 at 3 p.m. EST, thousands of Canadians including six prominent NMD researchers across the country will come together, virtually, to participate in The Tenaquip Foundation’s Walk for Muscular Dystrophy (Walk4MD).

Dr. Reshma Amin from the Hospital for Sick Children in Toronto is excited to be one of the Walk4MD Research Champions. “I look after so many amazing children with neuromuscular disease and their families. They deserve to be celebrated and what better way to do so than in partnership with MDC through the Walk4MD.”

“Important advancements are taking place in research right now, and we want to ensure that these advancements continue, and result in better treatments and ultimately a cure for neuromuscular disorders. We feel very fortunate to have the support of Dr. Reshma Amin, MD; Dr. Bernard Brais, MD, PhD; Dr. Nicolas Chrestian, MD; Dr. Robin Parks PhD; Dr. Gerald Pfeffer, MD, PhD; and Dr. Martine Tetreault, PhD and look forward to our NMD community getting to know these incredible individuals better,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

She added, “I’m also pleased to share that The Tenaquip Foundation is joining us again as title sponsor, and Global has returned as media sponsor for the second year in a row. Like us, they are committed to raising awareness and funds for the Canadian NMD community.”

The Tenaquip Foundation’s Walk4MD is a signature fundraising event for MDC that raises critical funds to support Canadians impacted by neuromuscular disorders. This year, due to the ongoing COVID-19 pandemic, the funds raised are more important than ever.

“There is still urgency to raise funds to meet the increased needs of our clients during this time,” says Lintern. “Like last year, we’ve had to cancel the majority of our fundraising events for the safety and well-being of our team and the NMD community. That unfortunately, has resulted in a 60 per cent decrease in revenue in our first quarter last year.”

The goal of The Tenaquip Foundation’s Walk4MD this year is to raise $870,000. These funds will be invested in services and programs, like equipment, and ensure MDC can meet the unique needs of the neuromuscular community while continuing to invest in research for better health outcomes for individuals impacted by neuromuscular disorders.

To learn more about The Tenaquip Foundation’s Walk4MD or to register for this exciting event, please visit walk4MD.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 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

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

National Volunteer Week 2020

Muscular Dystrophy Canada is a volunteer-driven organization. We rely on dedicated, enthusiastic, diverse and dynamic people to help us meet our mission – from clients to family members, community supporters to like-minded organizations, and healthcare professionals to Fire Fighters and beyond.

All of our volunteers are key partners in the delivery of MDC’s support programs, services, fundraising efforts, and governance. We want to thank ALL of our wonderful volunteers for everything they do, and for believing in our mission.

For National Volunteer Week (April 19–25), we highlighted a few of our extraordinary volunteers. Read their profiles below:

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Response to PMPRB Draft Guidelines Consultation

February 14, 2020

Dr. Mitchell Levine
Chairperson
Patented Medicines Prices Review Board
333 Laurier Avenue West, Suite 1400 Ottawa, Ontario K1P 1C1
Email: PMPRB.Consultations.CEPMB@pmprb-cepmb.gc.ca

Dear Dr. Levine:

Muscular Dystrophy Canada is thankful for the invitation to attend the PMPRB Consultation meeting in Ottawa on December 10, 2019 and for the opportunity to respond to the Draft Guidelines Consultation.

Muscular Dystrophy Canada leads Canada’s neuromuscular community as the central axis in a complex health services, policy, and information ecosystem that surrounds and support our core concern: Canadians with neuromuscular disorders. Muscular Dystrophy is the umbrella name used to cover the 160-plus known neuromuscular disorders today. While the disorders we represent are individually rare, they are collectively common, impacting more than 50,000 Canadians from coast to coast. These disorders weaken the body’s muscles, or the communication between the nerves and the muscles. The causes, symptoms, age of onset, severity and progression vary depending on the individual and the exact diagnosis. For many individuals, the disorder is fatal. Currently, there is no cure for these disorders. We believe that neuromuscular disorders will one day be cured (with treatments and therapies), and that our organization will be a positive contributor to that outcome by: investing in innovative research that has potential for real-world impact; providing programs and support services for those impacted by neuromuscular disorders, their caregivers and families, health professionals and researchers; and remaining committed to advocating for fair and patient-centric policies that improve the lives of all Canadians with neuromuscular disorders.

Currently, the range of treatments and therapies available to support impacted individuals can come with a heavy financial burden and a significant economic impact. As an organization, we are passionate in the belief that every Canadian with a neuromuscular disorder deserves to benefit from leading-edge discoveries in the research field in a timely manner and equal access to the best treatments. Muscular Dystrophy Canada together with members of its Medical and Scientific Advisory Committee are of the strong belief that, if PMPRB guidelines are enacted as proposed, the amendments may result in unfavorable consequences as described below:

Significant decreases in price will result in delays in manufacturers launching their product in Canada and this will have a negative impact on the overall length of time that it takes for Canadians to have access to new medicines in Canada, if at all. We are seriously concerned that Canadians with neuromuscular disorders will, in fact, see a decline in innovative medicines access. Members of our Medical and Scientific Committee Dr. James Dowling (Hospital for Sick Children, Toronto), Dr. Ronald D. Cohn (Hospital for Sick Children, Toronto), and Dr. Craig Campbell (Children’s Hospital London Health Sciences Centre, London) together published an article in April 2018 in the Journal of Medical Genetics that emphasizes: “many exciting treatment approaches are currently in clinical trial, and several have achieved conditional or full market approval in various regions of the world. Many other treatments are in the pipeline, and we predict that over the next decade meaningful therapies will become widespread across the neuromuscular disease spectrum.”

In addition to compromising timely access to new therapies for patients with neuromuscular disorders, Muscular Dystrophy Canada is profoundly concerned about the impact the pricing changes will have on the health research infrastructure of Canada. Although PMPRB confidently notes that pricing is not a significant determinant to bringing clinical research to Canada, the Life Sciences Ontario (2019) survey says otherwise. In that survey, 91% of pharmaceutical executives said the changes would have a negative effect on clinical research in Canada, with 44% saying the negative effect would be “significant.” There will be significant adverse impact of the proposed changes on research incentives and investments, which is important as we are on the verge of life-changing therapies and treatments for individuals with neuromuscular disorders.

While we support the efforts to lower the costs of prescription drugs for Canadians, we strongly believe that this must be done in a way that ensures timely access by Canadians to new medicines and to clinical studies of new medicines. Our recommendations are in line with those proposed by Health Charities Coalition Canada (HCCC) and we strongly echo the discussion outlined in their thorough and carefully well thought-out submission. We suggest you carefully review our submissions and take into account these four key recommendations:

Recommendation #1:

That the PMPRB undertake a stepwise approach to its proposed changes by initially enacting only the changes to the comparator countries. Once the impact of this change is fully understood and if the objective of lowering Canadian prices sufficiently has not been met, then other new elements could be considered.

Recommendation #2:

That a multi-stakeholder dialogue be established to evaluate the impact of the changes on availability of medicines and specifically to inform any decision on whether and how to implement the use of the new economic criteria.

Recommendation #3:

That the Federal Government require PMPRB to hire a third party to conduct a formal assessment of the potential and real-time impacts of the reforms on research investment and activity in Canada (including clinical trials).

Recommendation #4:

That the Federal Government require that PMPRB, along with other appropriate agencies, immediately establish a formal mechanism for meaningfully and continuously engaging patient representatives in its decision-making and processes to ensure patient voice, choice and representation.

Thank you for the opportunity to review the guidelines and provide comments. We remain committed to working with the Federal Government and the broader stakeholder community in defining an implementation and evaluation process that will address both cost savings and access

to innovation that will optimally serve the needs of individuals with neuromuscular disorders in Canada. We wish our feedback will be taken into consideration as you prepare the final guidelines and we would be happy to answer any questions you might have.

Kind Regards,
Muscular Dystrophy Canada

Key topics in Spinal Muscular Atrophy research discussed at first ever Muscular Dystrophy Canada SMA Research Summit

Toronto, November 15, 2019 – Research experts, the medical community, and industry stakeholders came together in Toronto this week at the inaugural Muscular Dystrophy Canada (MDC) SMA Research Summit to discuss new research and development.

“This summit was an important opportunity for us to review the latest developments and discuss where there are opportunities to enhance our role in the neuromuscular community in order to provide the proper support for individuals and families impacted by SMA,” said Barbara Stead-Coyle, CEO, Muscular Dystrophy Canada. “We thank our generous sponsors Biogen, Novartis, and Roche for providing us with the opportunity to have these important conversations, as well as our organizing committee—co-chairs Dr. Rashmi Kothary and Dr. Maryam Oskoui, as well as Dr. Craig Campbell and Dr. Lawrence Korngut.”

Key topics under discussion included new research, clinical trial developments, and the changing treatment and regulatory landscape in Canada.

“As part of MDC’s ongoing commitment to influence positive change, we convened leading medical and scientific experts to share and collaborate in ways that will foster medical advances and impact the lives of the individuals and families that we serve. We are excited to continue the momentum and are planning MDC’s first nationwide Neuromuscular Impact Conference, which will be held next year so our clients have an opportunity to hear and speak to the scientific and medical community,” said Daria Wojtal, Director of Research, Muscular Dystrophy Canada.

Spinal muscular atrophy is a severe, inherited, progressive neuromuscular disease that causes major problems with walking, muscle strength, fine motor skills, and the basic physical functions of breathing, swallowing, and feeding. Until recently, there were limited treatment options for SMA, but prognosis has been transformed with the recent availability of a number of effective disease-modifying therapies, notably nusinersen, known as Spinraza. Great advances have been made and there is a pipeline of clinical trials that are transforming what it means to be diagnosed with this rare neuromuscular disease. 

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 muscle.ca or call our toll-free number at 1-800-567-2873.

MEDIA CONTACT

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca

Alberta Fourth Province to Expand Access to Spinraza™ for Patients Impacted with Spinal Muscular Atrophy

Alberta fourth province to expand access to SPINRAZA™ for patients impacted with Spinal Muscular Atrophy.

Muscular Dystrophy Canada (MDC) commends the Government of Alberta for joining Quebec, Saskatchewan, and Ontario in expanding access to SPINRAZA™, a life-changing treatment for individuals impacted with Spinal Muscular Atrophy (SMA).

In Alberta, the following patients will now be eligible for reimbursement of SPINRAZA™, in addition to Type 1 patients:

  • patients who are pre-symptomatic with two or three copies of SMN2, or
  • have had disease duration of less than six months, two copies of SMN2, and symptom onset the first week after birth and on or before seven months of age, or
  • are under the age of 18 with symptom onset after six months of age, regardless of the ability to walk.
  • Other patients who do not meet the expanded funding criteria may be considered in exceptional cases.
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