June is ALS (Amyotrophic lateral sclerosis) awareness month, and one Portage resident is doing her part in fighting the disease that has affected her and her family.
Emily Preun, a cat groomer at Kenny's K9 as well as an addiction worker at Portage Collegiate Institute, is a person who is a carrier of a rare genetic mutation called C9ORF72, which causes familial ALS, meaning Preun will develop ALS in her lifetime.
Currently, there are very few treatments and no cure for ALS. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.
Preun participated in the ALS Society of Manitoba 5k this past weekend on June 18th in Winnipeg. The Walk To End ALS happens annually and is an effort to help raise funds for ALS initiatives such as care homes, research, and just to support organizations who are affiliated with fighting the disease generally.
Preun explains that the walk did feature a little bit of rain to start the day, but that didn't dampen the spirits, adding that it was a warm day, and the rain eventually did stop, and everything went as planned.
Besides Preun genetic condition, she has many reasons to fight ALS.
"In addition to the fact that I have this gene mutation, I have also lost three different family members to ALS, so there's that personal piece of it. I walk every year in honour of my grandfather. He passed away in 1993. My step-grandfather on the other side of my family passed away in 2010, and my uncle died of ALS in 2020."
After Preun's uncle was diagnosed, he went in for genetic testing and discovered he was a carrier of a rare gene mutation.
"It's relatively new information," says Preun. "With the Ice Bucket Challenge, that happened in 2014, it really ignited a huge fundraiser movement, and we saw a lot of donations coming from across the world, and that really helped to further push research. So, they were able to do a lot more research into gene mutation. Up until this point, it was really assumed that ALS was a really random disease, and for the most part, it is. They say about 90 to 95% of cases are completely random."
She notes that there were at least a couple hundred people at the walk, and over $74,000 has been raised to this point for the cause.
"It was really awesome to see all the different teams that were out there. So, the thing with the ALS walk is you can sign up as an individual, or you can sign up as a team of people. So oftentimes, when there are families that are affected by this, they get together with their family and friends, and they'll walk in honour of specific family members. I went by myself. My family wasn't available to go with me this weekend. So, I took my dog, and we went together. Just having that connection to all these people, right, you can walk up to anybody at the event and ask them who they're walking for and have that immediate connection with somebody else who has experienced living with a family member that's had ALS."
Preun says her goal moving forward is to help fight ALS to the point where there could be some sort of medication she could take to hold off ALS progression.
"It's my hope that I can live to see my 60th birthday and just live as healthy of a life as possible."
On top of all the money raised from the walk, Kenny's K9 held a Nail Clinic Fundraiser for the ALS Society of Manitoba in June, raising $430 in the process.