FUNDING FOR INNOVATIVE THERAPIES FOR HEREDITARY ATAXIAS

For immediate release

Montréal, April 28, 2023 – It is with great enthusiasm that Génome Québec, Ataxia Canada and Muscular Dystrophy Canada announce the launch of the Innovative Therapies for Hereditary Ataxias competition to encourage the discovery and development of new therapies and to mobilize the research ecosystem. The three organizations aim to jointly invest $1M to support projects with a maximum of $330,000 per project for a period of two years.

The goal of this competition is to meet the needs of people affected by these rare neurological diseases, to enable them to benefit from genomic innovations and to encourage the development of innovative therapies. It supports the objectives and orientations of the provincial and federal governments, notably by accelerating therapeutic innovation (Politique québécoise pour les maladies rares) and by supporting research to improve access to affordable and effective drugs for the treatment of rare diseases.

This competition is open to researchers affiliated with a Québec university and its affiliated institutions (including hospitals and research institutes).

The deadline for submitting the mandatory registration to Génome Québec is June 8, 2023.

Learn more “FUNDING FOR INNOVATIVE THERAPIES FOR HEREDITARY ATAXIAS”

Global Alliance for Myotonic Dystrophy

To raise awareness about myotonic dystrophy and improve the quality of life of people living with the disorder, over 50 myotonic dystrophy-focused organizations from around the world have united to celebrate Myotonic Dystrophy Families Day on July 23, and International Myotonic Dystrophy Awareness Day on September 15.

In addition to the Alliance’s core mission of raising myotonic dystrophy awareness among the general population, this year the focus will also be on raising awareness and education among clinical care teams, and clinical trial readiness for participants.

“Muscular Dystrophy Canada is honoured to work with organizations in the Global Alliance for Myotonic Dystrophy Awareness Initiative. Together we can make a difference,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

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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

The Tenaquip Foundation Walk for Muscular Dystrophy raising funds, hope and unity in new ways

FOR IMMEDIATE RELEASE July 29, 2020

Toronto, Ontario – Muscular Dystrophy Canada (MDC) is bringing the neuromuscular community together like it never has before. On September 12, 2020 at 2 p.m. EST, thousands of Canadians across the country will come together, virtually, to participate in The Tenaquip Foundation Walk for Muscular Dystrophy (Walk4MD).

“This is the first time MDC has hosted a virtual fundraising event, and we are excited to have The Tenaquip Foundation as our title sponsor. They are amazing supporters of the neuromuscular community in Canada, and this year they have extended their commitment by joining the Walk4MD family,” says Stacey Lintern, Interim CEO, Muscular Dystrophy Canada.

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NMD4C propelling research forward for patients, scientists and clinicians

FOR IMMEDIATE RELEASE – Friday, January 31, 2020

Toronto, Ontario – A new partnership between Muscular Dystrophy Canada (MDC) and the Canadian Institutes of Health Research (CIHR) announces the creation of a new neuromuscular network in Canada.

Led by Dr. Hanns Lochmüller, NMD4C is an integrated research network for patients, scientists, and clinicians to improve outcomes and access to therapies for patients with neuromuscular disorders in Canada.

“We’re absolutely delighted to receive this catalyst funding for our NMD4C network. Because neuromuscular diseases are individually rare, but collectively affect many children and adults across Canada. Working together, pooling expertise and developing shared infrastructure at a national level is essential if we want to make rapid progress towards giving all Canadian patients world-class care and develop new treatments. This is a fantastic opportunity for doctors, researchers and the patient community to come together to do just that, and we can’t wait to get started,” stated Dr. Lochmüller.

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Treating Duchenne Muscular Dystrophy Focus of New Research Partnership

For Immediate Release – April 4, 2019

Toronto, Ontario – Muscular Dystrophy Canada (MDC) and The Foundation for Gene & Cell Therapy (Jesse’s Journey) are joining forces to accelerate ground-breaking research focused on new treatments for Duchenne muscular dystrophy to the sum of $600,000.

Through this partnership, MDC will provide $300,000 with Jesse’s Journey matching the commitment. Two research projects will be funded:

  • Dr. Anthony Gramolini: Non-viral, immune-modulatory nanoparticles for delivery of CRISPR/Cas9 as a treatment intervention for Duchenne Muscular Dystrophy.
  • Dr. Michael A. Rudnicki: Exosomal Delivery of Wnt7a for treating Duchenne Muscular Dystrophy.

“For anyone impacted by a neuromuscular disorder, research offers hope that better treatments will be uncovered, and ultimately, a cure. Both of these research projects show very promising initial results and we are thrilled that this investment will help move the research forward,” said Barbara Stead-Coyle, CEO, Muscular Dystrophy Canada. “We are thrilled to be working with Jesse’s Journey to fund this promising research and can’t wait to see what positive impacts it has on our clients and families.”

Barbara Stead-Coyle
CEO, Muscular Dystrophy Canada

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