June is ALS Awareness Month!
June is ALS awareness month in Canada.
Each year at ALS Double Play we have held our Annual Intentional Walk for ALS. This year is different.
Like many, we had so many plans.
We had an exciting new event to share with everyone, one that we were sure would bring in the crowds. We would draw everyone in and then tell them all about ALS, invite them to enjoy bubble tea from local shops and munchies from small and big restaurants and food trucks. It would be a festival like atmosphere, only with a purpose.
We’ve had to shift the way we run the charity. We are careful about the messaging we share. We are cognizant that, while we are all experiencing COVID19 at the same time, we’re not all in the same situation.
The sad reality is, while COVID19 has stopped and postponed many things in our lives, it has not stopped or postponed ALS.
People living with ALS are already immune-compromised. This has been difficult because ALS often requires assistance 24/7 from people who live outside their homes. Some people have had to lay off their outside assistance because they work in other personal or nursing homes. As a result, caregiving will fall to partners and family members of the one living with ALS.
People living with ALS and their family members cannot risk becoming sick at all.
Moreover, any government funding for clinical trials or research has been diverted to COVID19. This means that important trials and research for ALS has been stopped. This is also why fellowships like the one ALS Double Play supports, are so important. Because our fellowship is supported by donor dollars and not the government, our fellow is able to continue her important ALS work.
ALS still has no cure, but effective treatment may be here. A new drug, know as Radicava (edaravone) is being tested and given to many ALS patients around the world. It is thought to slow the movement of ALS through the body. Only time will show its efficacy. This is the first drug that has been approved by the FDA in twenty years for ALS. This is hope.
This ALS awareness month, because we are unable to hold our 5th Intentional Walk for ALS, we are hosting a new virtual event, Mind Body Bingo. Keeping the struggles related to COVID19 in mind, we curated a list of activities to move you physically and mindfully. The beauty is that anyone, anywhere in the world can participate. We ask that our participants share their progress with us on social media so that we can help raise awareness every day!
2020 has been a challenge to the world. We continue to share the stories of people we love living with ALS, and those we have lost. We look forward to seeing you soon and in the meantime, hope that you might help us continue our fight to make ALS history by participating in our June awareness event. Registration is open!