On October 3rd, more than a hundred of Carol's nearest and dearest safely gathered in person at Venue TwentyTwo at The Westin Ottawa to celebrate her life, love and laughter. Many others from around the world were with us in spirit - some highlights shared here for you to experience as well. Much appreciation to Sean for photographing the day and Madeline for recording the remarks; thank you all for sharing your photos for the "big screen" and joining us in celebrating our Carol. Double-sided program booklet: Photos of the day: Video of Remarks [indicates start time]: [00:15] Keith Sharma ..read more

Carol introduced this blog with the quote: “In the end, it's not going to matter how many breaths you took, but how many moments took your breath away.”  She embraced that fully, not only following her diagnosis, but her entire life. With heavy hearts, we share that Carol passed away on January 31, 2021. For over seven years she shared her ALS journey on this forum -- and -- there’s so much more to Carol than you may know. She has always been a committed advocate and champion for those needing a voice: this was her DNA long before her diagnosis.  And much as she was proud of her ad ..read more

Very excited to introduce a new patient led initiative whose mission is to improve access to promising ALS therapies in Canada. Please consider getting involved and check out our brand new website by clicking the button below! ​ ALS Action Canada Click on the button below to read ALS Action's position paper; "The Plan to End Canada's ALS Crisis" Position Paper ..read more

John Assaraf Travis and I have big news to share with you...we bought a house! This is an unbelievable dream come true for us and one we never thought possible. When I was diagnosed with ALS in 2013, we were told I had 2-3 years left to live, and since we were living in a 3 floor walk up with a loft, I would need to move into accessible housing right away.  It was devestating to have to sell the first home we owned together.  We moved into a "luxury rental" that met many of my accessibility needs. Cut to 7 years later and I'm still here!  My only regret was that instead of ..read more

Algonquin 2019 Algonquin 2019  ?? Just wanted to take this opportunity to show my gratitude for all this beautiful country has given us; Travis's citizenship allowing us to be a family together, health care, employment, leadership, compassion, maple syrup, nature in all of it's glory and Canadian people from all walks of life!  ? We are so fortunate to have Canada as our home.   ​Please take care of one another ..read more

Memories of an incredible morning were captured by graphic recording artist, Lynne Dalgleish as the #ALS community celebrated its first-ever virtual finish line for the #WalktoEndALS! I am beyond moved and inspired by all who participated in Global ALS/MND Awareness day! Our team the Living Loving Laughing Walkers raised an incredible $7,750.00 for the ALS Society of Canada! Travis and I are so thankful to feel your support, you keep us going! Mom, Me & Dad Uncle Geoff Ayla & Brittany Heather, Andy & Clem Donna & Crai ..read more

I'm not sure what happened to March, April & May, but we have arrived somehow to June!  And you know what that means, it is ALS Awareness month! I'm still here - somehow I am one of the lucky ones (depending on your definition of luck) did you know that only 20% of people living with ALS live past 5 years after diagnosis, and only 10% live past 10 years?  I am in my 7th year living with ALS.  You have a 1 in 300 lifetime risk of developing ALS.  The reason some people call it a "rare disease" (it's not) is because people living with ALS die so quickly so there is not ..read more

Living Loving Laughing Walkers 2019 As many of you are probably aware, this year's Walk to End ALS in Ottawa scheduled for May 30th has been cancelled.  I'm very disappointed as we had a big group of Living Loving Laughing Walkers ready to join us!  Of course it is the right decision and we are not giving up.  All Walks across the province have been rescheduled as a VIRTUAL Walk for June 21 which is ALS/MND Global Awareness Day. Although we can’t walk together physically, we can still stay connected and have fun with our teams. We are all in this together! The Walk to En ..read more

On Wednesday, April 22nd  the PALS & CALS Advisory Council (PCAC) of the International Alliance met for a roundtable discussion on the impacts of COVID-19 in our global ALS/MND community.  To listen to the webinar, click on the image below. Click on the image below for questions and answers from this roundtable. COVID-19 IMPACT ON PALS & CALS ..read more

Important information regarding this year’s International Symposium    As a result of the continuing global uncertainty caused by the Covid-19 pandemic, the MND Association has taken the very difficult decision to cancel this year’s International Symposium on ALS/MND. This follows detailed consultation with the International Alliance of ALS/MND Associations and our 2020 hosts ALS Canada and ALS Quebec. ​ We have considered many factors over recent weeks, including the potential for global travel, rules around gatherings and social distancing, and the financial implications of the va ..read more