Muscular Dystrophy Canada

Thank you goes out to Pyper and Heather!!

Do you or someone you know as part of the neuromuscular community have a special talent that you would like to share? If so, please respond to the Talent Call below.

Today is International Volunteer Day. Thank you to all volunteers that I have the pleasure of working with at Muscular Dystrophy Canada. Thank you for supporting people with neuromuscular disorders in living life on their terms. Please check out the Muscular Dystrophy Canada social media feed for profiles of some of our amazing volunteers that we are sharing today. #IVD2021 #ThankYouVolunteers #VolunteerCanada

Wow! Thank you to every donor and supporter who has made a contribution or shared our messages today on #GivingTuesdayCA. We still have a long way to go but we... know that together, we can do anything. If you’re interested in supporting the future of life-changing neuromuscular research, please consider making a gift today: https://bit.ly/3cONBuD #Together #MakeaDifference

Can you imagine a world where research is taking place that’s influencing treatments and cures for each neuromuscular disorder? A world where all new ideas can ...be explored and tested so we can get to a cure quickerwhere scientists have the funds they need to affect change We can. And we know, that together we can invest in the future. So much progress is taking place in research right now, and you can help propel it forward. Today on #GivingTuesdayCA, visit https://bit.ly/3cONBuD to invest in the future of research.

Thank you Canada Post Community Foundation for collaborating with MDC to launch the AccessAbility Program. This program will include presentations at schools to... support children affected by neuromuscular disorders, as well as resources and tools for educators and staff! Learn more about this program: http://ow.ly/koO350GTtCq See more

We are excited to recognize the contributions of individuals and groups who champion our mission with courage, determination, and passion with the Dr. David Gre...en Awards. To see the full list of 2021 Dr. David Green Awards recipients, visit https://bit.ly/3CA4C6g Subscribe to our newsletter here: https://bit.ly/3HpsVYb #DrDavidGreenAwards #MuscularDystrophyCanada

The most wonderful time of the year is right around the cornerand this year marks the 26th edition of our Holiday Ornament Campaign! Spread some holiday cheer ...and shop our collection of limited-edition ornaments that make the perfect gift for your loved ones, family members, and friends. Each ornament you purchase helps provide essential equipment, support programs and services, and fund ground-breaking neuromuscular research. This year’s new North Pole ornament shows three snow friends ready for a holiday celebration! Add this beautiful ornament to your tree as a reminder that MDC is here to support you, so that you can spend more time making holiday memories with those who matter most to you. Get yours now at https://bit.ly/3v3Cs1r #MDCYourTree #HolidaySeason

Did you know Ontario is the only province in Canada that screens newborns for #SpinalMuscularAtrophy? We want to make screening a reality across our country. Ch...eck out our new video to learn why this small heel prick can be life-changing for Canadian babies and families. Then join the #screenforSMA movement by sharing this video with your friends, family and community leaders. See more

Muscular Dystrophy Canada is excited about our youth transition conference happening this weekend. If you are interested, please register and join us or if you know someone who may be, please share!

Today we honour and thank veterans who fought for us, and our fellow Canadians that continue to serve our country. #CanadaRemembers #RemembranceDay #LestWeForget

We are recruiting for some new volunteer opportunities. Please reach out if you are interested.

I'm so excited to be able to share the 2021 recipients of Muscular Dystrophy Canada's Dr. David Green Awards. It is because of amazing volunteers, stakeholders and other partners that people with neuromuscular disorders are able to live their best lives!! Congratulations and thank you!

Today we remember and honour the sacrifices of the many individuals who have served our country and those who continue to serve. #CanadaRemembers #RemembranceDay #LestWeForget

You’re invited! MDC’s Virtual Neuromuscular Conference, an extension of the #LetsTalkNMD webinar series, is taking place from November 11 to 24. The conference... is FREE and offers educational sessions providing evidence-based information, and will allow past grant recipients to present their research findings. The virtual sessions will be engaging and informative. Everyone can participate in discussions and ask questions. Visit https://bit.ly/NMDConf2020 to learn more, register for individual sessions and build your own personalized schedule! #MDCConference2020

In 30 minutes (at noon EST) ... we will be holding a webinar on "Gene Therapy for SMA: Data, Implications and Global Perspectives" featuring Dr. Nicolas Chrestian. Register and join us: http://bit.ly/Nov4SMA #GeneTherapy #SMAGeneTherapy #SpinalMuscularAtrophy

Don’t forget to register for TOMORROW’s webinar on diagnostic techniques for genetic neuromuscular diseases. Tuesday, November 3rd at 5 pm EST. This webinar is... CPD-accredited. The NMD Rounds & Educational Webinars is a self-approved group learning activity (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada. This webinar is primarily targeted at Canadian clinicians, academics and trainees with an interest in neuromuscular disease. NMD4C and MDC are providing organizational and technical support, and this is an independent clinical/academic webinar with no industry sponsorship. Agenda: 1. Muscle MRI transforming care and research in genetic muscle disease -- Dr. Jodi Warman Chardon (NMD4C Steering Committee member) 2. Use of Ultrasound in Pediatric Neuromuscular Disorders -- Dr. Jean Mah 3. Still Gold: the Ongoing Need for Muscle Biopsies in the Molecular Age -- Dr. Leslie Hamilton (NMD4C member) Learning objectives: 1. Highlight diagnostic techniques (Muscle Biopsy, Neuromuscular Ultrasound, Muscle MRI) to improve phenotyping for patients with genetic neuromuscular disease 2. Develop a biopsy-based diagnostic approach in the genomics era with myopathies/muscular dystrophies 3. Recognize clinical applications of neuromuscular ultrasound and diagnostic value in muscle and nerve disorders 4. Identify Muscle MRI patterns to guide genetic testing interpretation and myopathy mimics If you have any questions, please email [email protected] Register: https://bit.ly/DxGeneticNMDsNov3

Happy Halloween

Thank you everyone!!

Strathcona Firefighter Michael Nicholson showing his support today as We Walk as one!! Thank you!!

Our Edmonton Walk Ambassador Pyper Whitecotton and her Mom Heather as We Walk as one today!! Thank you!!

A huge shout out to St Albert Firefighter Jay Howells for joining us today as we #WalkasOne

Today is the day! Join us at noon as we walk as one!!

Our friend and client, Pyper Whitecotton, cant wait to Walk As One with us tomorrow at 2 p.m. EST. Join thousands of Canadians across the country for Muscular... Dystrophy Canadas biggest event of the year! The Tenaquip Foundation Walk4MD will be our first-ever nationwide, virtual eventand we cant wait to see YOU there! If you have registered for The Tenaquip Foundation Walk for Muscular Dystrophy virtual eventthank you for your support and for continuing to fundraise for MDC. Its not too late to register for this great event! Register now! https://bit.ly/339Ybad If you have not yet made a donation to The Tenaquip Foundation Walk for Muscular Dystrophy there's still time. Help us reach our goal! Visit walk4md.ca to give now.

Join the Toronto Fire Fighters, along with thousands of Canadians across the nation for The Tenaquip Foundation Walk for Muscular Dystrophy taking place tomorro...w at 2 p.m. EST. We hope to see you there! Your participation in this years virtual event will support individuals and families impacted by neuromuscular disorders across the country! Its not too late to register for this amazing event! Register now! https://bit.ly/339Ybad Want to support the event but cant make it this year? No problem! You can show your support by making a donation to The Tenaquip Foundation Walk for Muscular Dystrophy online at walk4md.ca. #WeWalkAsOne #Walk4MD

Tomorrow is the day!! Tune in tomorrow at noon and join us as We Walk as One!!

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. Learn more: https://muscle.ca//muscular-dystrophy-canada-appoints-new/ See more

Hey Canada! The Tenaquip Foundation Walk for Muscular Dystrophy virtual event is only two days away, and we cant wait to see YOU there! We are so excited to ...Walk As One with you on September 12 at 2 p.m. EST! We want to give a big thank you to everyone who registered and fundraised for the event. Thank you so much for your dedication and support to the neuromuscular community. We can't wait to see you on Saturday!

Click the link below on September 12 at 2 p.m. EST to watch The Tenaquip Foundation Walk for Muscular Dystrophy virtual event live online! https://casts.streamme.ca/Walk4md

Hey Edmonton be sure to register and join us this Saturday for the Tenaquip Virtual Walk for MD!!

With our virtual Walk event less than two weeks away, we want to give a special thank you to our 2020 Walk4MD title sponsor: The Tenaquip Foundation! We appreciate your continuous, generous support!

Muscular Dystrophy Canada (MDC) Board of Directors member Yazmine Laroche cant wait to Walk As One with YOU on September 12 at 2 p.m. EST. The Tenaquip Founda...tion Walk for Muscular Dystrophy is a chance to get together with family and friends to support the MDC community, says Yazmine. We celebrate our accomplishments and recognize our people, our allies, our heroes. But this years virtual Walk stands out more than others have in the past. This years Walk gives us the opportunity to come together across the countryfor the first time and really do a national Walk, says Yazmine. Our team, 'Boardwalkers', are going to do a virtual cross-Canada Walk and we hope that lots of people will join us. The Tenaquip Foundation Walk4MD brings people who are impacted by neuromuscular disorders together, along with their families, friends, community members, healthcare professionals, researchers, and of course Fire Fighters. Its a celebration of how far we have come as a community. Will you Walk with us this year? We are counting on your support! Register before September 4th to ensure that you are on the list to receive the livestream link details in your inbox before the virtual event. Register for the virtual event here: https://bit.ly/31Q3zR9

We want to ensure you have the best possible experience when you are participating in The Tenaquip Foundation Walk4MD on September 12, so weve teamed up with A...ccessNow to provide you with information on the most accessible places in Canada. The AccessNow app lets you discover accessible parks where you can complete your virtual Walk4MD. There are 100s of accessible outdoor spaces to discover based on reviews from people with disabilities across the country. To make this partnership even more exciting, if 1,000 Walk participants review 1,000 parks or places (leave a pin on the AccessNow map), we have a donor who will make a $1,000 donation to The Tenaquip Foundation Walk4MD! Even more, if you leave a pin on the AccessNow map AND you are a registered participant for The Tenaquip Foundation Walk4MD, your name will get put into a draw to win an MDC swag bag! Welcome, AccessNow to the #Walk4MD family!

It's #WeighInWednesday! Head over to our Facebook Story to take today's poll: "Do you know about the Patented Medicines Review Board (#PMPRB) reforms and the r...ole PMPRB plays in how medicines for neuromuscular disorders are reviewed, approved and funded in Canada?" [Yes! Very familiar with PMPRB] [No! Tell me more about PMPRB]

The Tenaquip Foundation Walk for Muscular Dystrophy is less than two weeks away! We want to give a big thank you to our media sponsors for helping us make this ...event happen! Thank you to Global Toronto, Global Montreal, Global Halifax, Global Winnipeg, 680 CJOB, Global Regina, Global Saskatoon, Global BC, Global Edmonton, and Global Calgary, Global News Radio 770 CHQR. #Walk4MD #WeWalkAsOne See more

For 65 years, Fire Fighters have pledged to be there for Muscular Dystrophy Canada and the families impacted. Normally you would see us out in your local commun...ities holding out a boot and raising much needed funds but due to COVID-19, we cant. We want to challenge Canadians to help Fill the Boot. Many Fire Fighters across the country have stated that they still want to fundraise and support MDC! We now have a Virtual Fill the Boot website, a safe way for communities to continue to support their local fire departments. Donate today at www.filltheboot.ca .

JOIN MDC and Neuromuscular Disease Network for Canada - NMD4C for a CME-accredited webinar on genomics TODAY at 5pm EDT. The NMD Rounds & Educational Webinars i...s a self-approved group learning activity (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada. Learning Objectives: 1. Compare different genetic technologies and select the best test for your patient 2. Gain a better understanding of result interpretation and variants of unknown significance 3. Recognize opportunities for implementing genetic counselling into patient care 4. Identify the appropriate use of non-genetic diagnostic tests in the genomic era Agenda: 1. Introduction - James Dowling 2. Genetic counselling: What do families need to know and when? -- Lauren Brady 3. Testing platforms - Kim Amburgey 4. Non-genetic diagnostics in the genomics era - Hernan Gonorazky 5. Variants of unknown significance - James Dowling If you have any questions, please email [email protected] Register at bit.ly/Genomics_101

Shanon Brausen has been an MDC friend and client since she was 13 years old, when she was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD). Shes be...en attending the Walk for Muscular Dystrophy (Walk4MD) in Edmonton, AB, since they held their first Walk event there nearly 12 years ago. To Shanon, The Tenaquip Foundation Walk4MD represents togetherness, unity, and friendshipand she cant wait for this years virtual, nationwide event on September 12, 2020 at 2 p.m. EST. I hope that The Tenaquip Foundation Walk4MD virtual event brings more awareness about neuromuscular disorders and brings more clients together across the country, says Shanon. Shanon is walking in hopes of more treatments in the future. Your participation and support for The Tenaquip Foundation Walk4MD will help individuals and families across Canada who are impacted by neuromuscular disorders, by helping provide critical programs and services, like our equipment program; and, ensuring MDC can continue improving the health outcomes of the neuromuscular community through the momentum of our research investments. Will you Walk as One with us this year, too? Help provide SUPPORT and HOPE to thousands of Canadians. This is your chance to make a difference. Join us for The Tenaquip Foundation Walk4MD! Don't waitthe event is less than three weeks away! https://bit.ly/3iqIPoT

We want to give a very special shoutout to our Tenaquip Foundation Walk for Muscular Dystrophy media sponsors. Thank you to Global Toronto, Global Montreal, Glo...bal Halifax, Global Winnipeg, Global News Radio Winnipeg 680 CJOB, Global Regina, Global Saskatoon, Global BC, Global Edmonton, and Global Calgary, Global News Radio 770 CHQR for joining our #Walk4MD family this year. We cant thank you enough for your generous support! #WeWalkAsOne See more

Our summer newsletter is now available! Read about how MDC has been supporting Canadians impacted by neuromuscular disorders through COVID-19. Learn about our #...LetsTalkNMD webinar series; how supporters like YOU help drive our research; and find out more about our exciting upcoming events like The Tenaquip Foundation Walk for Muscular Dystrophy and The High Rise Challenge. Stay engaged and up-to-date with MDC and read our summer newsletter now! https://bit.ly/2QcKjpS

Please join us for a Virtual Network Meeting on August 27 at 6:30pm EST. Share your thoughts and concerns about returning to school and work and connect with others in similar situations! Register here: bit.ly/MDCNetworks

Many parents and caregivers face new and difficult choices about how their child will return to school in the fall. We have partnered with Muscular Dystrophy Ca...nada to host a free webinar THIS Friday, August 21, 2020, at 12 p.m. EST. Learn more and register: https://bit.ly/RtnToSchool. Panellists include: - Dr. Ronald Cohn, President and CEO at The Hospital for Sick Children Sickkids - Dr. Laura McAdam, Clinician Investigator, Pediatrician at Holland Bloorview Kids Rehabilitation Hospital - Angela Nardi-Addesa, System Superintendent Leadership, Learning and School Improvement, Special Education and Inclusion at the Toronto District School Board - Janine Small, Centrally Assigned Principal at the Toronto District School Board - Nicola Worsfold, Director of Research and Advocacy at Jesses Journey, Parent

JOIN US on Tuesday August 18th from 1:00-2:00 pm ET for a webinar on "Adults with #SMA" https://bit.ly/AdultSMA This webinar is aimed at understanding the curre...nt clinical and treatment experiences/practices of adults with Spinal Muscular Atrophy. This webinar will help to answer the following questions: (1) What are the clinical needs of adults with SMA? (2) What is the current state of research as it relates to treatment(s) for SMA? (3) What are the inequities in accessing treatment(s) for adults with SMA in Canada? (4) How is SMA in adulthood monitored? (5) How important are monitoring measures in determining eligibility for treatment? SPEAKERS: Dr. Tim Hagenacker, MD Dr. Gerald Pfeffer, MD PhD Ms. Catherine Boivin, Adult living with SMA #adultSMA

Hey folks!! We are getting closer to walk day. In order to participate in the virtual walk you must register!! Please register today and help MDC reach their goal.

Fire Fighters have been supporting MDC since 1954 and annually raise $3 Million in support of Canadians impacted by neuromuscular disorders. Due to the impact o...f COVID-19 and the cancellation of many MDC fundraising events across the country, we've experienced a 60% reduction in revenue since March. Unfortunately, as a result, we have had to reduce financial resources to our client equipment program by 40%, and currently have nearly 100 clients waiting to receive funding for much needed equipment. September is typically one of MDC's busiest and most successful months for Fire Fighter #filltheboot events. MDC has received inquiries from dedicated Fire Fighters asking about events and how MDC can support virtual activities. MDC staff members are here to support you and we have some exciting options to offer. Please contact us so we can assist you: muscle.ca/take-action/fire-fighters/fire-fighter-team While Fill the Boot events may look a little different this year, the goal is still the same. We know we can count on Fire Fighters to keep this 65+ year tradition alive despite the current pandemic. Thank you to Fire Fighters for all you do in your communities and for the neuromuscular community. Until there's a cure, there's us.

Muscular Dystrophy Canada (MDC) Board of Directors member Kerry Zado cant wait to #WalkAsOne with YOU on September 12. My favourite thing about the walk is ge...tting together with all the friends I have made over the years, says Kerry. As much as Id like to be with everyone this year at The Tenaquip Foundation Walk4MD, I am looking forward to the virtual event to keep our momentum going. Even in these tough times, we need to raise awareness and critical funds for MDC. The Tenaquip Foundation Walk for Muscular Dystrophy (Walk4MD) virtual event is a very important to Kerry for a number of reasons. It gives the people in the neuromuscular community the chance to connect and share stories, successes, and failures that we can all learn from, says Kerry. Whether youre a person with a neuromuscular disorder or a family member, caregiver, friend, or fundraiser, it gives us all that chance to connect. Thank you for your support, Kerry! We are looking forward to connecting with you once again at The Tenaquip Foundation Walk4MD on September 12 at 2 p.m. EST! Have you registered yet? Dont miss out on the chance to virtually connect with Canadians all over the country and to show your support for the neuromuscular community! We can't wait to see you there. Register now: https://bit.ly/3gjfQRL

Thanks for sharing your experience Josh

We have a spot reserved just for you! So what are you waiting for, register today for the nationwide, virtual #Walk4MD to support the thousands of individuals a...nd families who are impacted by neuromuscular disorders across the country. Then join us September 12, 2020 at 2 p.m. EST as we #WalkasOne, virtually. You dont want to miss out on our biggest event of the year! The Tenaquip Foundation Walk4MD is about bringing our neuromuscular community together, celebrating unity, and raising awareness and critical funds so together we can continue to provide Canadians with critical programs and services. As you may know, weve had to cancel a lot of our fundraising events this yearthankfully The Tenaquip Foundation Walk4MD was not one of them. But, the reality is our capacity to fundraise has been drastically diminished. So much so, that MDC has experienced a decrease in revenue by over 60 per cent. That means our equipment program had to be decreased by 40 per cent, and sadly, fewer clients are getting the support they need. There are now almost 100 people on MDCs waiting list for critical equipment, and we are receiving four times the usual number of requests for other programs and services. As you can see, we need participants, like you, to register, fundraise, and show your support for the neuromuscular community, now more than ever. But lets not stop therehelp us spread the word! Register now and invite your parents, your neighbours, your best friend, your dentist. Yes, I want to reserve my spot https://bit.ly/2CVJD4C

Muscular Dystrophy Canada (MDC) is proud to announce that The Tenaquip Foundation will be our official title sponsor for this years virtual Walk for Muscular D...ystrophy. We are so excited that The Tenaquip Foundation is our title sponsor for our first virtual fundraising event! says Stacey Lintern, Interim CEO, Muscular Dystrophy Canada. Raising funds during COVID-19 has been a significant challenge, however, The Tenaquip Foundations sponsorship has set us up to achieve our fundraising goal. We cannot express enough our gratitude and appreciation for their ongoing commitment with supporting the neuromuscular community. Thank you for joining us this year, The TENAQUIP Foundation, as we get ready to #WalkAsOne on September 12 at 2 p.m. EST to support individuals and families impacted by neuromuscular disorders across the country. To register for this exciting event visit, walk4md.ca

In an effort to raise awareness and increase understanding of Spinal Muscular Atrophy (#SMA) as part of #SMAAwarenessMonth, we are hosting a webinar on Tuesday ...August 11th from 1:00-2:00 pm ET. We would be happy if you can join us. Register here: https://bit.ly/SMAandYou This webinar will help to answer the following questions: (1) What is SMA? (2) What are the different types of SMA? (3) What are the signs and symptoms of SMA? (4) What are current treatment options and treatments in development? (5) What is the current state of research of SMA (any clinical trials)? SPEAKERS: Dr. Maryam Oskoui, MD, MSc Dr. Marc-Olivier Deguise, MD, PhD

Improvements in available technology and clinical care have resulted in increasing numbers of children and adults with neuromuscular disorders being placed on l...ong-term home mechanical ventilation. JOIN US on Tuesday July 28th from 1:00-2:00 PM ET for information on home mechanical ventilation. REGISTER HERE: https://bit.ly/COVIDMechanicalVent Learn about how intense care management has been delivered virtually for children and adults using long-term ventilation during the COVID-19 pandemic and how virtual intervention compares to usual care on healthcare utilization, caregiver burden, health cost-effectiveness including cost of family caregiver time, and efficiency of clinical visits. SPEAKERS: Dr. Reshma Amin, MD, FRCPC, MSc Staff Respirologist & Sleep Physician Division of Respiratory Medicine The Hospital for Sick Children Regina Pizzuti, Manager of the Ontario Ventilator Equipment Pool Francine Buchanan, Parent of a Child Using Home Mechanical Ventilation