Muscular Dystrophy Canada

MDC thanks the Williams Lake Fire Department (WLFD) and the Wildwood Volunteer Fire Dept for hosting this year’s #Filltheboot campaign. With the support of their generous community and local businesses, they raised just over $14,200! This year marks the 50th anniversary of the partnership between the WLFD and MDC. Thank you for your commitment and support to this longstanding tradition.

We are grateful to have The Tenaquip Foundation joining us as our title sponsor for the second year in a row. Like us, they are committed to raising awareness and funds for the Canadian neuromuscular community. https://bit.ly/3vlv8NP

Despite having to cancel their in-community Rooftop Campout this past weekend due to increased COVID-19 restrictions, the Olds Fire Department Fire Fighters’ Association are excited to announce their virtual ‘May for MD’ campaign. For the entire month of May, ‘Rescue Randy’, their department mannequin, will spend the month of May in his tent on the roof, to help raise funds and awareness for MDC client programs and services. Since 1967, Olds Fire Fighters have raised an incre...dible $148,400 in support of MDC and we remain grateful for their continued support! In addition to the funds they raise online, Olds Fire Fighters have partnered with Grouchy Daddy's who have also had to pivot their support for the campaign with the closure of all dine-in service across the province. For the month of May, Grouchy Daddy’s new food truck the ‘Grouchy Express’, will be offering diners the opportunity to show their support through the purchase of a new truck specialty, the ‘Popper Burger’. $1 from every burger purchased will be donated to the Olds Fire Department #RoofTopCampout. Funds raised through the burger promotion are also being matched by another generous community donor, INOX Fabrication Ltd. To show your support for Olds Fire Fighters, you can make a donation online at http://ow.ly/tZk150EKk7Q.

Ottawa residents, the 24H Dystrophy Ascension is happening TODAY at noon until tomorrow, 12:00 pm! For 24 consecutive hours, the Pre-Service Fire Fighting students at Collège La Cité will be climbing stairs in their fire fighting gear to raise funds for Canadians affected by neuromuscular disorders. You may not be able to go out and cheer them on in person, but they would still greatly appreciate your support. Donate online at: muscle.crowdchange.ca/1462

Register today for the next #MDCLetsConnect virtual network taking place on May 20 at 7pm EST! Dan Lajoie is an award-winning advocate for inclusion and accessibility, but he describes his greatest achievement as his family. He lives with Spinal Muscular Atrophy Type II and is a program manager for a health care provider. Join us to hear Dan’s story about his journey with a neuromuscular disorder, through to the adventures that led him from then to now.... Register: http://bit.ly/LetsConnectMay20

We are excited to provide an update on our collaboration with Novartis Pharmaceuticals Canada Inc. to make newborn screening for spinal muscular atrophy (SMA) a national reality. Ontario is currently the only province to have SMA on their newborn screening panel. We want to change that. We recently completed phase 1 of the project, creating a readiness assessment plan for implementing a standardized SMA screening program in Canada. Today, we launch Phase 2 and are inviting me...dical and laboratory experts from across the country to submit funding proposals to launch local initiatives. With the support of the SMA community from coast to coast, we are standing up for Canadian babies. Read more details on our latest news post https://bit.ly/3wCxZm2 and join us in the call to #screenforsma. Cure SMA Canada Regroupement québécois des maladies orphelines

The staff at MDC are getting excited about the Tenaquip Foundation Walk4MD on June 19. Will you walk and roll with us? Register today. https://bit.ly/3uN5AZq

Calling all #Walk4MD Hockey Fans! Make sure to tune into Hockey Night in Canada tonight, Saturday May 8, and see last years #Walk4MD ambassador Deccan from team Trekkin’ for Deccan meeting his favorite hockey player. Deccan’s not only a hockey fan, he score goals and sets fundraising goals for the #Walk4MD. You too can help MDC score, by checking out Deccan’s trick shot and then signing up for or donating to the 2021 Tenaquip Foundation #Walk4MD. https://bit.ly/3rGjD1D

2021 Tenaquip Foundation Walk4MD hosts Dayle Sheehan and William Truman are excited to join the #Walk4MD community! I am able to appreciate the importance of an event that raises funds to provide services to families, funding for research, and efforts to help the brave children affected with muscular dystrophy, their moms, their dads and their big brothers. William Truman "I am excited to be part of the 2021 Walk4MD. This event is so important to the neuromuscular com...munity, raising awareness and funds that support programs, services and research." Dayle Sheehan Register today for the nationwide, virtual #Walk4MD, then join William and Dayle to walk and roll virtually on June 19 at 3 p.m. EST. https://bit.ly/3vlv8NP

May is Myositis Awareness Month! What is myositis you ask? Let's first start with the term "myopathy." Myopathy = A general term used to describe a condition in which the muscle fibre doesn’t work properly causing muscle weakness. Myositis = A term used to describe a type of myopathy that causes inflammation of muscles, leading to weakness, swelling and pain. Myositis can be chronic (long-standing) and the muscle stiffness or weakness can impact voluntary movements such as ...walking or trying to grab something. Myositis includes #dermatomyositis, #polymyositis, juvenile forms of myositis, and #inclusionbodymyositis. Symptoms can include weakness, swelling of the feet and legs, and pain in muscles and joints. The majority of myositis are #autoimmune. To learn more about autoimmune neuromuscular disorders, please check out this MDC #LetsTalkNMD webinar: https://www.youtube.com/watch?v=kwhN2LSq6pg #FastFacts #Dermatomyositis is the most common type in children. #Dermatomyositis and #polymyositis affect more women than men. #InclusionBodyMyositis, affects more men, usually over age 50. #CommonSymptoms of myositis include muscle weakness, muscle pain, and fatigue. These symptoms can sometimes be difficult to diagnose. #Diagnostic tools may include a physical examination, muscle biopsy, MRI, blood tests, electromyography or genetic testing. While there are no cures for chronic myositis, many of the symptoms can be treated with medication (corticosteroids), physical therapy, exercise, heat therapy, orthotics, assistive devices and rest. If you have any questions about myositis, please email [email protected]

Neuromuscular clinical trials in Canada? We have an update! Despite a challenging year due to the pandemic where many clinical trials were paused or activities slowed down significantly, this spring, two landmark clinical trials have launched in Canada: 1. We are excited to share that an international randomized, multicenter, double-blind, placebo-controlled, phase 2/3 clinical trial testing the safety and efficacy of Tideglusib in #CongenitalMyotonicDystrophy (#CDM) patients... aged 6-16 has begun recruiting. This is the FIRST EVER clinical trial for CDM to take place in Canada, even though CDM is one of the more common neuromuscular diseases in Canada, affecting more than one in 50,000 live births. The two Canadian sites are the Children’s Hospital London Health Sciences Centre (LHSC) in London, ON and the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, ON, with Drs. Craig Campbell and Hanns Lochmüller as Principal Investigators. https://www.prnewswire.com//amo-pharma-announces-activatio 2. The first gene therapy trial for #Duchenne muscular dystrophy in Canada has been launched! Pfizer’s investigational gene therapy treatment is now recruiting in Canada at Children’s Hospital London Health Sciences Centre in London, Ontario. This is an international study and their first site to open in North America. Boys with a confirmed diagnosis of Duchenne muscular dystrophy, 4-7 years old, and ambulatory (walking) may be eligible. https://www.clinicaltrials.gov/ct2/show/NCT04281485 If you are interested in learning more about either study above, please contact [email protected]

Meet #Walk4MD Research Champion Dr. Robin Parks. Dr. Parks has been a #Walk4MD participant for over a decade. He participates in the walk every year because it gives him the opportunity to connect with clients and hear their stories. Dr. Parks says: As research scientists, we sometimes get caught up in our day-to-day work in the laboratory. Being a part of the MDC family provides a consistent reminder of the true meaning and value of our work. The 2021 Tenaquip Foundation #...Walk4MD Research Champions were selected based on their scientific contributions to the neuromuscular disease community and the Muscular Dystrophy Canada family. They’ve come together to support the #Walk4MD because they know first-hand the impact your support has on Canadians affected by neuromuscular disorders. Will you join them? Visit walk4MD.ca now to register or donate. bit.ly/3duYyCM

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 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 t...hat the research funded this year will bring us closer to cures for all children, youth, adults and families affected by neuromuscular disorders. MDC is honoured to fund the exceptional researchers, clinicians and academics who will lead these seven new projects taking place in hospitals and universities across Canada, and around the world. Learn more: http://ow.ly/cbdN50EQC4U

There's still time to register for tomorrow's #MDCLetsConnect virtual network! Join Dan Lajoie, an award-winning advocate for inclusion and accessibility, as he shares his journey with a neuromuscular disorder. Register: http://bit.ly/LetsConnectMay20

Did you know May is Friedreich's Ataxia Awareness Month and today is #FriedreichsAtaxiaAwarenessDay! Here are top 10 facts you should know about #FriedreichsAtaxia #FA: #1 Friedreich = first described in 1863 by Nicholaus Friedreich; Ataxia = movement disorder. #2 Friedreich's Ataxia is a genetic/inherited neuromuscular disorder (meaning it is passed from parents to their children through genes). Friedreich's Ataxia is caused by an alteration (mutation) in a gene called FXN.... The FXN gene carries the instructions for making a protein called frataxin. Frataxin is a protein is found in cells throughout the body, with the highest levels in the heart, spinal cord, liver, pancreas, and muscles used for voluntary movement (skeletal muscles). #3 People with Friedreich's Ataxia have gene mutations that limit the production of frataxin, which is an important protein that functions in the mitochondria (energy producing factories) of the cell. Additionally, in Friedreich's Ataxia, specific nerve cells (neurons) degenerate, which is directly manifested in symptoms. #4 Friedreich's Ataxia typically occurs in a child only if both parents are carriers; that is, if both parents carry one normal (working) version of the FXN gene and one mutated (non-working) version of the FXNgene. Friedreich's Ataxia is a recessive condition, which means that both parents have passed down their mutated FXN gene to their child. #5 Although it is a rare disorder, Friedreich's Ataxia is the most common form of inherited childhood-onset ataxia, occurring in about 1 in 40,000 people. In some regions or ethnic groups, this number might be a little higher or lower. #6 Friedreich's Ataxia typically causes slow, progressive loss of muscle coordination (ataxia), slurred speech (dysarthria), weakness and sensory loss. #7 No two people experience Friedreich's Ataxia the same way: persons affected by Friedreich's Ataxia can experience a range of neurological and non-neurological symptoms such as loss of coordination (ataxia) in the arms and legs, fatigue - energy deprivation and muscle loss, vision impairment, hearing loss, aggressive scoliosis (curvature of the spine), diabetes mellitus (insulin - dependent, in most cases) and serious heart conditions, including hypertrophic cardiomyopathy or arrhythmias. #8 The rate of progression of Friedreich's Ataxia varies from person to person. #9 Symptoms usually begin between ages five and 15, with most diagnoses made before age 25. Individuals with late onset FA may develop symptoms in the late 20s or 30s. #10 Many of the symptoms and accompanying complications of Friedreich's Ataxia can be treated with rehabilitation (mainly physiotherapy) and supportive treatments to help individuals maintain optimal functioning for as long as possible. At the moment, no cure exists but there are many clinical trials in North America, with two in Canada. If you have a question about Friedreich's Ataxia, please email [email protected]

Hey Ottawa! The class of 2020/2021 Pre-Service Fire Fighting students at Collège La Cité are holding their event, 24H Dystrophy Ascension, on May 27-28. The class will take turns climbing stairs in their fire fighting gear for 24 consecutive hours, to raise funds for Canadians affected by neuromuscular disorders! With your help, these dedicated students can reach their goal! Donate today: muscle.crowdchange.ca/1462

The Nauwigewauk Fire Fighters held a mulch sale on May 1 with all proceeds being donated to MDC in support of Canadians affected by neuromuscular disorders. In one day, the Fire Fighters raised $8,500 thank you! Nauwigewauk Fire Fighters have been raising funds for MDC since 1987 and we are very proud to have their support.

Thanks to you, our amazing donors, in 2019-2020, MDC invested more than $2M into research; provided more than $1.7M in funding 1,400 pieces of vital equipment (total value over $4.4M); and answered 19,074 calls, emails, meetings, and interactions with clients. Become part of the MDC family, making a powerful impact on the neuromuscular community, by becoming a Monthly Donor today: bit.ly/3rWuQKM #MakeADifference #MDCChangeMakers

This Friday, November 27th at 6pm MST members of the Peace River Fire Fighters Association, led by Jonah Kurylowich, will take to the roof of Tim Hortons for their 4th Annual Rooftop Campout! Since 1970, Peace River Fire Fighters have raised an amazing $72,200 in support of those affected by neuromuscular disorders through various fundraising events. Due to COVID-19, their usual Rooftop Campout opening ceremonies had to be cancelled however, you will still be able to make a donation safely on-site, or through their online Fill the Boot page. If you would like to show your support for Peace River Fire Fighters this year with a donation, please go to: muscle.akaraisin.com/ui/virtualfilltheboot/t/PeaceRiver

All MDC clients are invited to join us on Thursday, November 26 at 9:00pm EST (6:00 pm Pacific) for our next #MDCLetsConnect Virtual Network Meeting. Our guest speaker, Ean Price will be discussing Technology for Independent Living. Please register now: http://bit.ly/MDCNov26

Reminder! Join us tomorrow to learn more about Technology for Independent Living. Register now: http://bit.ly/MDCNov26 #mdcletsconnect

Can you believe it? We are just one week away from #GivingTuesdayCA. We want to give a BIG thank you to everyone who has supported our Giving Tuesday campaigns in the past. Your generosity gives hope, support, connection and creates change for the Canadian neuromuscular community. We hope you will consider making a gift again this year on December 1, 2020. An incredibly generous donor has agreed to match all #MDCGivingTuesday funds up to $25,000! We have the potential to rai...se an incredible $50,000 to support clients across the country. Will you help? https://bit.ly/3m34vIS

We are only 2 weeks away from #GivingTuesdayCA. We need your help to reach our goal this year! Are you interested in helping MDC with our #GivingTuesdayCA campaign? Please comment below if you are willing to share our message with your connections to help spread the word about our #MDCGivingTuesday efforts! Over the next two weeks, we will send a message and image to everyone who commented that you can then share! We are so thankful for our dedicated volunteers, ambassadors, clients, donors and supporters. We appreciate everything you do to help. Let's make this #GivingTuesdayCA the best one yet!

This year’s 25th anniversary ornament encompasses a beautiful winter scene that will have you reminiscing of cozy winter evenings with family spent around a warm fire, and building a snowman on your first snow day. Create new memories with your loved ones and spread some holiday cheer this season. MDC’s holiday ornaments make the perfect giftand even more, you will be supporting individuals and families across the country who are impacted by neuromuscular disorders. Shop our wide-range of ornaments, with unique designs from throughout the years! Our ornaments are selling fast, and this year we have a limited supply, so don’t wait! Get your holiday ornaments now and #MDCYourTree! https://bit.ly/2IOmfsM

We have a winner! Congratulations to team Caserne 50 Montréal et les Toniques pour Erwan et Léonard! For a second year in a row, they have won the trophy as the highest fundraising team at the High Rise Challenge with a total of $24, 238! Thank you to all participants and donors who contributed to our grand total of more than $195,500! Here's the moment Erwan finds out he is adding a second trophy to his collection! Congratulations Erwan!

Don’t miss out! More #LetsTalkNMD #MDCConference2020 sessions are taking place tomorrow and Friday! Thursday November 19, 2020 12pm EST | Dance Exercise for People with Neuromuscular Disorders | https://bit.ly/NMDDanceExercise 1pm EST | Exercise for Neuromuscular Disorders, A Focus on FSHD | https://bit.ly/NMDExercise... 2pm EST | Healthy Lifestyles & Weight for People with Neuromuscular Disorders | https://bit.ly/NMDWeight Friday November 20, 2020 1pm EST | Rapid Research Rounds | https://bit.ly/NMDRapidResearchRounds Please note that there is a specific Zoom registration link for each session. Please ensure you complete the zoom registration for each session you would like to attend. If you have any questions about the conference or registration, please email [email protected] To see the full conference schedule, visit https://bit.ly/NMDConf2020

We would like to extend our biggest thanks to Chetwynd Volunteer Fire Department for hosting their #filltheboot campaign on a chilly weekend in October. The Chetwynd community continues to show great support of families and individuals affected by neuromuscular disorders through their generous giving. This year they raised an incredible $2,216. Chetwynd VFD made an additional donation of $1,500 bringing their Fill the Boot total to $3,716! Wow thank you!

Looking for unique gift ideas this holiday season? Look no further! Our exclusive, uniquely designed holiday ornaments make a great, thoughtful gift. But, here’s how you can take it one step further: 1. Françoise Béland (MDC friend and Ottawa Chapter member) says her favourite way to gift our ornaments is to attach it to a bottle of wine as a hostess gift. It’s a win-win! The hostess receives a beautiful keepsake and you’ve supported a great cause. Thank you for the great ide...a, Françoise! 2. Tie the ornament to a gift box using a ribbon for a beautiful, and unique display. This way, your gift recipient gets a fun surprise before even unwrapping the gift! 3. Who says an ornament is only for a tree? You can hang it on a door handle, from the mirror in your car, or on a wall in your home wherever you pleasethe options are endless! Do you have any unique ideas on how to use one of our holiday ornaments? Share your ideas with us by tagging us on Facebook at @MuscularDystrophyCA and use the hashtag #MDCYourTree so we can see your post and share it! Have you purchased one of our holiday ornaments yet? They are selling out fast! Get yours now and receive it just in time for the holidays! https://bit.ly/2TgTrey