Category: Press Releases

Screening newborns for spinal muscular atrophy closer to reality in the Maritimes

  • Spinal Muscular Atrophy (SMA) is the leading cause of genetic infant death.
  • Early diagnosis is imperative to halt irreversible motor neuron loss and disease progression.

Toronto, ON, November 18, 2021 – Muscular Dystrophy Canada (MDC) today provided $414,000 to assist the Maritimes in evaluating methodology that would support readiness to add spinal muscular atrophy to their newborn screening panel. The Maritime Newborn Screening Program (MNSP), based at the IWK Health Centre but servicing Nova Scotia, New Brunswick and Prince Edward Island, was awarded the funds through a collaborative initiative between MDC and Novartis Pharmaceuticals Canada Inc. (Novartis).

“In a neuromuscular disorder like SMA, where time is of the essence, early diagnosis and prompt access to treatments are critical to achieving the best possible outcomes. Sadly, most provinces are not yet screening for this treatable disorder,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “I thank the healthcare leaders at MNSP, Novartis, the SMA community and MDC’s dedicated Board of Directors, Fire Fighters, clients, donors and supporters, for getting us another step closer to ensuring all Canadian newborns are screened for SMA.”

Newborn screening is a test done for babies shortly after birth to look for treatable diseases that usually show no symptoms in the newborn period.

In order to ensure an evidence-based approach to funding, MDC and Novartis commissioned a readiness assessment to evaluate the feasibility of adding SMA to all provincial and territorial screening panels. Proposals were then evaluated by an independent international peer review committee under MDC’s guidance. Further details on the needs and readiness assessment, project selection, peer review, community advisory committees and video overview can be found here: muscle.ca/newborn-screening/.

“We’re honoured to partner on work that will bring lasting impact to the SMA community and healthcare systems across Canada,” said Andrea Marazzi, Country Pharma Organization Head, Novartis Pharmaceuticals Canada. “Time to diagnosis is crucial in SMA and we applaud the Maritimes for their commitment to prioritize screening at birth.”

Newborn screening for SMA currently only takes place in Ontario, but projects are now underway in Alberta and Manitoba as well. Future phases of the national collaboration will include additional project funding, evaluation of projects and knowledge transfer, and exchange with stakeholders to ensure policy adoption across all provinces and territories.

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.

– 30 –

For more information:

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

AccessAbility Program to increase disability and inclusion education in classrooms

FOR IMMEDIATE RELEASE

November 17, 2021 – Today, International Student’s Day, Muscular Dystrophy Canada (MDC) is grateful to announce that Canada Post Community Foundation has provided $25,000 in funding to support an AccessAbility program. This program aims to shift the classroom setting by incorporating information and resources on disabilities, accessibility, inclusion and equity.

MDC’s AccessAbility program will focus on providing information for students and educators about living with a neuromuscular disorder (NMD), how to support individuals affected by a NMD and the development of a digital storybook through which students can share their personal neuromuscular stories.
While the majority of children and youth affected by NMDs have a physical disability, they can also experience sensory, development, hearing and learning disabilities. The unfortunate reality is that a large percentage of students who have disabilities feel like they do not fit in with their peers. This program will educate teachers and peers about living with a neuromuscular disorders while creating a more equitable and inclusive environment for children and youth affected.

“The information that will be shared with students, teachers and staff through the AccessAbility program will make a tremendous difference to increasing inclusion in Canadian schools,” shares Stacey Lintern, CEO, Muscular Dystrophy Canada. “MDC’s hope is for all students and educational staff to feel comfortable, accepted, and fully participate in their learning environment. Thanks to the generous support from the Canada Post Community Foundation, we are one step closer to making this the new reality.”

“The Canada Post Community Foundation is proud to help organizations that are working hard to make a difference in the lives of Canadian children and youth,” said Doug Ettinger, Canada Post President and CEO. “Through the generosity of our customers during our annual campaign, we’re able to fund incredible organizations that are focused on the complex and growing needs of young people in communities across the country.”

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

About the Canada Post Community Foundation

The Canada Post Community Foundation provides grants to Canadian schools, charities and organizations in an effort to make a difference in the lives of children across the country. It supports the small, underfunded projects that often go unnoticed, from coast to coast to coast. Through its grassroots, community-based approach, the Foundation plays a critical role in helping Canada Post achieve its purpose of A Stronger Canada – Delivered. To learn more about the Foundation, visit canadapost.ca/community.

– 30 –

For more information:

Heather Rice
Director, Marketing and Communications
Muscular Dystrophy Canad
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

Providing a path to practice: fellowship funding to support top-ranked Canadian clinicians

Muscular Dystrophy Canada (MDC) together with the Neuromuscular Disease Network for Canada (NMD4C) and the Canadian Society of Clinical Neurophysiologists (CSCN) are excited to announce a funding competition to award three new national clinical fellowship awards in neuromuscular medicine and electromyography.

The awards provide salary support for early-career clinicians to participate in a neuromuscular medicine and electromyography training program, with successful applicants being eligible to receive up to $76,500 in funding over a one-year period.

“Through providing fellowship opportunities for residents to pursue high-quality clinical training in the field of neuromuscular medicine and electromyography, we will create a path to practice for talented clinicians with a passion for neuromuscular disease, raising the standard of treatment and access to care for all Canadians affected by neuromuscular disease,” said Dr. Hanns Lochmüller, Lead Investigator, NMD4C.

A total of three clinical fellowships will be awarded on a competitive basis for the 2022/2023 academic year. These fellowships have been made possible by generous supporters of Muscular Dystrophy Canada and an unrestricted educational grant from Grifols Canada.

“Finding a neuromuscular specialist is an important step in a person’s healthcare journey, and we know there are few specialists across the country. Physicians can foster an environment that supports effective and informed decision-making, which is central to person-and family centred care,” said Stacey Lintern, CEO, MDC. “Together with NMD4C and CSCN, we are building a pipeline of excellence, and investing in top-ranked clinicians that will provide clinical care to individuals affected by neuromuscular disorders and help raise standards of care.”

Competition details:

The competition opens on October 8, 2021 with a deadline for submissions of November 19, 2021. The fellowship is open to Canadian citizens or permanent residents who have completed postgraduate training in adult or paediatric neurology or physiatry in a Royal College of Physicians and Surgeons of Canada accredited program at the time of commencement of the fellowship (at least one Canadian citizen/permanent resident will be awarded funding). It is also open to International/Canadian applicants who have completed postgraduate training in adult or paediatric neurology or physiatry outside of Canada that have met the Royal College of Physicians and Surgeons of Canada requirements, if they have the support of the proposed Canadian fellowship training director. We encourage all who are eligible to apply!

View the full fellowship guidelines here.

Please share this opportunity with any of your colleagues and within your neuromuscular networks.

For further inquiries, please contact Dr. Homira Osman at Homira.osman@muscle.ca.

National collaboration awards funding for newborn screening in spinal muscular atrophy (SMA)

  • SMA is the leading cause of genetic infant death.
  • Early diagnosis is imperative to halt irreversible motor neuron loss and disease progression.
  • More than $700,000 awarded to projects across three provinces.

 

Toronto, ON, July 21, 2021 – Muscular Dystrophy Canada (MDC) today announced funding for newborn screening projects focused on spinal muscular atrophy from Alberta, Manitoba and Quebec. These are the first applicants to be awarded funds as part of a collaboration with Novartis Pharmaceuticals Canada Inc. (Novartis). This multi-year initiative will see up to $2 million invested, as well as ongoing support for the generation of critical evidence and best-practices to help make newborn screening for SMA a national reality.

“In a neuromuscular disorder like SMA, where time is of the essence, early diagnosis and prompt access to treatments are critical to achieving the best possible outcomes. Unfortunately, this is not the reality for most Canadian children born with SMA,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “With today’s announcement and the unparalleled commitment of government leaders, Novartis, the SMA community and MDC’s dedicated Board of Directors, Fire Fighters, clients, donors and supporters, we are one step closer to ensuring all Canadian newborns are screened for SMA.”

Newborn screening is a test done for babies shortly after birth to look for treatable diseases that usually show no symptoms in the newborn period. While Ontario is currently the only province to screen for SMA, MDC’s goal is to have the disorder added to all provincial newborn screening panels across Canada.

“As the mother of an infant with SMA who was not screened at birth, I know first-hand the devastating implications of delayed diagnosis,” said Laura Van Doormaal, Newborn Screening Advisory Committee member. “Today’s announcement means that one day soon, no matter where they live all families will have the opportunity to make critical healthcare decisions and realize their child’s full developmental potential from the very beginning.”

In order to ensure an evidence-based approach to funding, MDC and Novartis commissioned a readiness assessment to evaluate the feasibility of adding SMA to all provincial and territorial screening panels. Proposals were then evaluated by an independent international peer review committee under MDC’s guidance. Funded projects include pilot programs and the mapping of post-diagnosis referral pathways. Further details on the needs and readiness assessment, project selection, peer review and community advisory committees can be found here: muscle.ca/newborn-screening

“Our collaboration with Muscular Dystrophy Canada truly exemplifies the Novartis purpose of improving and extending patients’ lives,” said Andrea Marazzi Country Head, Novartis Pharmaceuticals Canada. “We’re honoured to partner on work that will bring lasting impact to the SMA community and healthcare systems across Canada. Time to diagnosis is crucial in SMA and we applaud the first round of funding recipients and all engaged provinces for their commitment to prioritize screening at birth.”

MDC will continue to work with British Columbia, Saskatchewan and the Maritimes to accelerate newborn screening for SMA coast-to-coast. Future phases of the national collaboration will include additional project funding, evaluation of projects and knowledge transfer, and exchange with stakeholders to ensure policy adoption across all provinces and territories.

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.

-30-

 

For more information:

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

Learn more

MDC funds seven new projects to propel research forward during challenging times

Toronto, Ontario – Muscular Dystrophy Canada (MDC) is proud to announce an investment of $400,000 to fund seven new research projects in 2021 through the MDC Neuromuscular Disorder (NMD) Research Grant Competition, a dedicated Canadian source of funding for neuromuscular research. MDC will also invest in an international, collaborative, $1.15 million, research project through the European Joint Programme on Rare Diseases (EJP RD).

“Despite an unprecedented time, during which many like-minded organizations and agencies are not in a position to offer research funds in Canada, MDC is able to demonstrate its ongoing commitment to discovering cures,” stated Stacey Lintern, CEO, Muscular Dystrophy Canada. She added, “while others redirected their research funds towards the coronavirus, and this was much-needed, MDC recognized the need to maintain momentum, and ensure the incredible advances currently taking place in research are accelerated.”

In addition to the seven new projects being funded, MDC will continue its support of 12 active research studies from the previous year.

“MDC grant recipients are selected by medical and scientific professionals, as well as Canadians with lived experience. Research proposals are judged based on scientific merit, and the potential to translate findings into initiatives that will positively impact the NMD community,” said Dr. Daria Wojtal, Director of Research, Muscular Dystrophy Canada.

MDC relies on the generosity of donors to fund life-changing research.

Dr. Rashmi Kothary, Deputy Scientific Director and Senior Scientist at the Ottawa Hospital Research Institute and 2019-2020 MDC research grant recipient, said “to the families and donors, I would have to say a huge thank you. From my first day as a researcher, getting my first grant from MDC, you were there. Thank you for sticking by the research community for many, many years. Hopefully we can pay back the trust that you put in us.”

MDC is honoured to fund the exceptional and bright researchers, clinicians and academics who will lead these seven new projects taking place in hospitals and universities across Canada, and around the world.

The 2020-2021 research grant recipients are:

  • Dr. Alex Parker
    A Pharmacogenetic Pipeline for Charcot-Marie-Tooth Disease
  • Dr. Colin Crist
    Promoting Muscle Repair by Pharmacological Inhibition of eIF2a Dephosphorylation
  • Dr. Mohamed Chahine
    Human iPSC-derived Neurons as a Model of Congenital Myotonic Dystrophy Type 1
  • Dr. Nadine Wiper-Bergeron
    Improving Myoblast Transplantation Outcomes via Pharmacological Reprogramming
  • Dr. Nicolas Dumont
    Targeting Defective Stem Cells in a Preclinical Model of Myotonic Dystrophy Type 1
  • Dr. Rima Al-Awar (EJPRD/CIHR Co-funded)
    Safety and Efficacy of a Possible Epigenetic Therapy for Facioscapulohumeral Muscular Dystrophy
  • Dr. Toshifumi Yokota
    Enhancing the Efficacy of Antisense Oligonucleotide Therapy for Facioscapulohumeral Muscular Dystrophy

“Congratulations to the 2020-2021 grant recipients. MDC is committed to supporting opportunities that fulfill our commitment to invest in research that leads to information on diagnosis, treatment and health management of neuromuscular disorders; and, we’re confident that the research funded this year will bring us closer to cures for all children, youth, adults and families affected by neuromuscular disorders,” added Lintern.

DISCOVER THE PROJECTS WE SUPPORT

-30-

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 explore our website 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

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

-30-

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

Muscular Dystrophy Canada Receives National Accreditation

March 3, 2021 – Muscular Dystrophy Canada (MDC) has been awarded accreditation in Imagine Canada’s Standards Program for excellence in non-profit accountability, transparency, governance and fundraising. Created “by the sector for the sector”, the Imagine Canada Standards Program is the only national accreditation program that is designed for all Canadian charities and non-profits.

To earn the accreditation, organizations must demonstrate excellence in five fundamental areas: board governance; financial accountability and transparency; fundraising; staff management; and volunteer involvement. Accreditation is a sought-after hallmark of excellence within the sector for funders, donors, sponsors and supporters alike.

Organizations receiving the accreditation are awarded a Trustmark to signal credibility and build confidence with donors.

“The Imagine Canada Standards Program accreditation demonstrates MDC’s commitment to our donors, supporters, all Canadians who are impacted by neuromuscular disorders, and to the work that we do,” said Donna Nixon, Chair, Board of Directors, Muscular Dystrophy Canada.

Nixon added, “We’ve always held to these standards, but by completing this comprehensive application and peer-review process we’ve been able to refine and evolve some of our practices to further strengthen the organization. My fellow directors, the leadership team and staff at MDC were all instrumental in making this accreditation possible. I thank them for their hard work and commitment through the application process, and for ensuring that MDC is upholding Imagine Canada’s standards for excellence and leadership in the non-profit sector each and every day.”

“Earning the accreditation, especially in these changing times, shows remarkable resilience, and a strong commitment to innovation and excellence. We commend the latest well-deserving recipients of the Trustmark for achieving Imagine Canada’s Standards accreditation, and demonstrating outstanding adherence to sound governance,” said Bruce MacDonald, President and CEO of Imagine Canada.

To learn more, visit imaginecanada.ca.

- 30 -

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 THE IMAGINE CANDA STANDARDS PROGRAM

The goals of Imagine Canada’s Standards Program are to increase organizational excellence and transparency of charities and nonprofits, to build resilience and to strengthen public confidence in individual organizations and the sector as a whole. To earn the accreditation, organizations must meet 73 standards in financial management and accountability, fundraising practise, board governance, staff management, and volunteer management.

MEDIA CONTACT INFORMATION:

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