What is community?

It’s where we find people with whom we can share experiences. Community is where we are relentless in our efforts to change ALS forever. It’s where we come together and use our voice to fight for each other. To build resilience.


Community is where we come together to connect meaningfully.

A couple of weeks ago we turned to you and asked you to share some of your inspiring stories, messages, and words of hope. Your personal stories bring such hope and meaning into the lives of everyone in the ALS community because they are a way for us to connect and to support each other. And your stories help increase awareness about the disease and the outstanding need for support. As always, people and families who have been touched by ALS have responded by opening their hearts and have once again demonstrated the relentless courage of everyone who is facing or has faced ALS. Thank you to everyone who took the time to share your stories and words of hope. Although we’re unable to share them all at once, we read every submission and you’ll find some of your wonderful messages below.

Community is our collective voice.

“My mom was diagnosed with ALS in June 2019 right around her 58th birthday. She had been showing symptoms for a period of time before, but we were unable to get her a correct diagnosis until she spent eight days as an in-patient at Sunnybrook Hospital in Toronto. Since her diagnosis, my mom’s symptoms progressed rapidly, and we were quickly thrown into a place of medical complexity and lots of unknowns. Fast forward and we found out my mom actually had familial ALS—she carried the C9orf72 gene mutation. This wasn’t the news we wanted but it also wasn’t surprising. My mom had an aunt who had also been affected by ALS and her father presented similar symptoms to my mom’s disease progression before he passed. The puzzle pieces started to fit together. 

 This has led me on a journey over the last few months to obtain genetic testing for myself. I have subsequently found out that I too have the C9orf72 gene mutation. This was not an easy piece of news to digest. It has been hard to reconcile how ALS is weaving its way through our family. What I do know is that I will never stop fighting to give a voice to the ALS community. I will never stop hoping for a cure and a future in which my children do not have to carry the weight of this disease. I know one day we will be able to say that we beat ALS.” Jillian

Community is taking this journey together.

“I was diagnosed in September 2019 with bulbar ALS. I can’t speak and my food has to be soft or I choke. I’m 67 and I’m positive and happy. I plan on being here for a long time. Being positive is half the battle. I take numerous vitamins and I’m trying to keep active to avoid it affecting my body. Everyone be positive and optimistic and support loved ones who are sick.”Cathy

Community is the people who surround us when we need them most. 

“My mom, best friend, real life angel, was diagnosed with bulbar ALS seemingly out of nowhere in 2016. Her disease progressed quickly. Every day she declined a little bit more. Her speech was the first to go, then she wasn’t able to eat, walk, and finally breathe on her own.

 There was no plateau, it was just all downhill. Eventually, she only had the ability to move her right hand, and barely – but that allowed her to be able to communicate with notes and a text-to-speech app on her iPad. She died with medical assistance (MAiD) in 2017, just over a year after her diagnosis. That was the darkest time of my and my dad’s life. She was our world as we were a very small family. We did everything we could to care for her and provide her with the best life we could before she passed.

 My parents were high school sweethearts, and this loss devastated my father. Two short years later my dad ended up receiving a stage four lung cancer diagnosis. He chose to die by MAiD in the same hospital, by the same doctor. He wanted to experience the same departure that my mom did. I am now a 36 year-old orphan, or at least that’s how it feels. I am so lucky to have had such beautiful, amazing parents and to be able to send them off with beautiful good-byes. I hate that ALS stole my mother, and I’m sure her loss led to my father’s quick decline not long after.

 I participate in the Walk to End ALS every year. My mom made it to the first one I did in 2016, and I will keep walking for her for the rest of my life. It is not fair that this disease is 100% fatal. There needs to be some hope. I feel strongly that this will happen in my lifetime.” Lisa

Community is where we laugh, where we cry, and where we love.

“Just keep on dancing…this is what I got to do with my dad every single day! Every time I had to transfer him, we hugged, we shuffled and laughed. My young children would play loud music, run around and dance with us too! They had no idea that I was going through my biggest life challenge as a caregiver to their grandpa. I was exhausted but I had to keep on smiling and accept all the help I could get from family and friends. I loved every moment we got to spend living under one roof for the last two years of his 8-year battle. Time is precious. Live every moment to its fullest.”Michelle

Community is the support we give to one another.

“My father passed away from ALS in 1998, my uncle a few years later. 2 months ago my Aunt, who was recently diagnosed, also passed away. We have found out through genetic testing that ALS runs in our family. Although ALS has affected my family for years and will continue to do so for many years to come, I hope and pray that through the generous donations from the community and continued research that by the time my children are old enough to develop this horrible disease that there will be some treatment that will allow them to live long fulfilling lives. Praying every day for a cure so that no family ever has to go through what mine goes through daily.”Brooke 

Community is where we build hope. 

“I lost my brother 12 years ago to this terrible disease. Please help our excellent scientists and medical researchers to find a cure…Please always have hope and support those that have this diagnosis. God Bless you.”Roger


Community is not only the stories we tell, but the stories we hear. It is having somewhere to turn through the fear and the loss. It is the warm embrace of thousands of people who understand what you are going through. Community means so many things, and no matter what it means to each of us, our unique perspectives and stories help build support, friendship and hope for each other. 
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Thank you for sharing. 

We are so appreciative to everyone who has opened their hearts and shared their experiences. These stories not only continue to inspire our relentless drive to end ALS, they also bring us together and remind us that we are not alone. No matter what we have experienced or are experiencing, the outpour of support for each other is beautiful and inspiring.

Once again you have shown that our community is strong, united and filled with care!

Posted in: Stories