ALS Action Canada

A heartfelt thank you to Health Canada, Canadian Drug Agency, and all the MPs’ we met today, including Daniel MacDonald, Suzanne McGurn, Yasir Naqvi, Francis Drouin, and Judy Sgro. Our pALS had the opportunity to present their challenges in access to therapies in Canada. Together, we can continue the conversation around funding and awareness. Let’s work towards a future where all Canadians have access to the treatments they need. #EndALS #ALSAwareness #ParliamentForALS

Thank you to everyone who joined us at the ALS Advocacy Reception in Ottawa! 🎉 We had an incredible turnout of 145 attendees, and we were honoured to welcome the Minister of Health, Mr. Hon. Mark Holland, PC, MP, as well as the hockey legends Mr. Wayne Gretzky, Mr. Brendan Shanahan, Mr. Glenn Healey, and Mr. darryl sittler along with many other esteemed guests. A special and heartfelt thank you to MP and ALS Caucus Chair, Mr. Peter Fragiskatos, for sponsoring this impactful reception, and to all the representatives from ALS societies in Canada, pALS, cALS, NHL executives, and medical experts who joined us. We also want to extend our gratitude to our industry sponsors whose support made this event possible. Together, we’re raising awareness and advocating for better policies and support for the Canadians diagnosed with ALS. 💙 Your support makes a difference! Let’s continue this important work together. #ParliamentForALS #ALSAwareness #EndALS

The field of ALS research is witnessing an exciting breakthrough with Tofersen, a new therapy aimed at patients with SOD1 gene mutations. Our latest article article explores how Tofersen could revolutionize the treatment landscape for ALS, particularly in Canada, where the potential for genetic testing and personalized medicine is just beginning to unfold. For healthcare professionals, researchers, and anyone touched by ALS, understanding these developments is crucial. Let’s push the boundaries of what’s possible in ALS care and work together towards a future where this disease is no longer a death sentence. Read the full article here: https://bit.ly/3WN2DrA #Tofersen #GeneticTesting #EndALS #ALSResearch #ALSActionCanada

What a day! ⛳️ ISA Cybersecurity ’s 12th Annual Charity Golf Tournament in support of ALS Action Canada was yesterday and records were broken! Not only was it the largest turnout, but also the largest fundraised >> $31,600!! 🏆 Throughout the planning process, we learned about ALS and specifically about former Toronto Maple Leaf player, @Mark Kirton’s story. “ALS is not incurable, it is underfunded” - ALS Action Canada. Putting together a large tournament can sometimes feel like untangling a never ending knot, but this team tackled every knot together to make it an extra special day. Thank you! Laura Hand | Lindsay Ringuette | David Reid | Olivia Purchase | Elaine Sung, PMP, CSM | Brandon Wiley | Andrea Bailey | Jida El Hajjar | Kim McGlade Kevin Dawson | Enza Alexander | Andrew B. Alsactioncanada.org #cureALS #alsactioncanada #teamisacybersecurity

ISA Cybersecurity's 12th Annual Charity Golf Tournament was a record breaking success! Thank you to everyone who attended and helped raise funds for ALS Action Canada. It was an amazing day of golf, networking, and fun, all in support of a great cause. Here are a few highlights: ✨ Impactful Giving: Thanks to all our participants’ generosity, we raised a record $31,600 for ALS Action Canada! This significant contribution will empower critical research and provide life-changing opportunities for individuals and families who have been impacted by ALS. Your support truly makes a difference! 🌟 Memorable Moments: From friendly competition at the holes, to an inspiring and informative speech by Mark Kirton , Greg McCamus, Kevin Dawson, and more. 🎉 A Celebration of Community: The incredible support from participants, volunteers, and sponsors made it a day to remember. Thank you to all our partners and volunteers who helped make this event possible. We will see you next year! #CharityGolf #ALS #GolfForACause #ComingTogether #TeamISACybersecurity

Over the last couple of months, ALS Action Canada has worked closely with ISA Cybersecurity and continued to educate them about ALS. Former Toronto Maple Leaf Mark Kirton was diagnosed with ALS in 2018. They asked Mark, who is now is a board member of ALS Action Canada, to share his story. We hope you can find the time to read his touching words.💙 “Time is the most valuable commodity in the world - and very often taken for granted. And there sure isn’t a lot of time for people with ALS. Inevitably it’s a death sentence.” - Mark Kirton Read the full story here: https://bit.ly/3L7T3tR #ALSAwareness #ALSActionCanada #ALSAdvocacy

As #ALSAwarenessMonth comes to an end, we want to share a special message from Rick Zwiep, a dear friend, ALS Action Canada community member, and committed advocate for all Canadians impacted by #ALS.

We're honoured to share a heartfelt story from our community. Matthew Brown and Catherine have courageously opened up about their journey of telling their children about Matt's diagnosis with a rare progressive disease. Their story highlights the power of honesty and open communication within families, especially during challenging times. Read their full story and discover how open dialogue can help ease worry and grief, creating a supportive environment for families dealing with serious illnesses. Thank you, Matt and Catherine, for your bravery and for raising awareness about the realities of living with a rare progressive disease.💙 https://lnkd.in/giWaCwCw [Photo credits: The Canadian Press/HO] #ALSAwareness #ALSActionCanada #ALSAdvocacy

As #ALSAwarenessMonth comes to an end, we want to share a special message from Rick Zwiep, a dear friend, ALS Action Canada community member, and committed advocate for all Canadians impacted by #ALS.