The ALS Society of Manitoba hosted their annual Walk to End ALS this past weekend at the Riverbank Discovery Center, this in a two-event fundraiser to raise money and awareness of amyotrophic lateral sclerosis, known as Lou Gehrig's Disease, or simply shortened to ALS.

ALS is a disease that progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the brain’s connection with the muscles of the body break down, the individual will lose the ability to walk, talk, eat, swallow, and eventually breathe. There is no cure for ALS and few treatments are available for most people living with the disease.

Executive Director and Client Services Coordinator for the ALS Society of Manitoba, Diana Rasmussen, says their goal is to raise $165,000 for the Manitoba Chapter.  

She is quick to note that June is ALS Awareness month, and even though folks may have been unable to participate in either of the two 'Walk to End ALS' events (Winnipeg and Brandon), the fundraising efforts continue.

As of Monday evening, the total has reached $110,814.41 here in Manitoba, with Brandon's walk contributing just over $8,000.

Rasmussen says 40% of funds raised will be allocated to continue research in finding a cure.  The remaining 60% are used for advocacy and to provide community-based support to people and families living with ALS in our province.

"We need to continue to support research, but also to support our own programs here because we need to be sure that clients and families, their livelihoods are being looked after," she explains, "and that they get the support and care and resources that they need.  Without those they're going to have trouble because ALS is a very expensive disease."

"It can cost anywhere up to $200,000 or more in order to have all the equipment and nursing care in the lifetime of somebody who lives with ALS," continues Rasmussen. "Sometimes we've seen people put more than that with minimal assistance from the government because a lot of the programs that used to be there, like for renovations of homes, they don't exist anymore."

Equipment and home renovations include wheelchair ramps, bathroom renovations, feeding programs, breathing bags, walkers and power chairs and wheelchairs. The disease progresses quickly, and thus the home needs constant and continuous changes to accommodate the decrease in mobility and independence.

"We try to provide resources here as well as trying to support the client and family because care needs increase and a lot of that falls back onto family when the system cannot fulfill it and help with the care in the home," she adds. "We need to make sure that the client knows that we're here to help in any way we can.

"That may be that they need thickener for fluids, or they need more protein in their food, so we purchase protein powder and thickener, and BOOST and ENSURE, so that maybe those with limited income can get those extra calories that help them sustain."

Rasmussen says it's very important to reach the goal of $165,000 "in order to be helping people with ALS for the coming year, because $165,000 may seem like a lot but it's not a lot when you look at the bigger picture when 60% stays here, and 40% goes to research which is most crucial. So, we'd love to exceed $165,000 if we can in order to continue to provide resources for people living with ALS and motor neuron diseases (MND)."

The Brummit Feasby ALS House is a specialized home for patients with ALS/MND located in Winnipeg. It is the first and only one of its kind in North America.

"This provides people who don't have anybody or cannot manage in their own homes any longer to be able to have the resources to be able to come and live in a place where there is care 24/7 and they can realize their full potential and quality of life that respects their rights and dignity, and I think this is very important," she adds.

For more information, visit ALS Society of Manitoba here!