Community support helps the ALS Society purchase equipment van

The ALS Society of Alberta was honoured to present its new equipment transport van, made possible by Co-op Home Health Care, the Calgary Old Time Hockey Players Association, and other generous supporters. The equipment van allows the Society to better respond to the rapidly changing needs of those affected by ALS by delivering equipment quickly and efficiently.

Thank you to Rob Naf (Co-op Home Health Care), Jim Feeney and Gerry Braunberger (Calgary Old Time Hockey Players Association) and the ALS Society Board Chair, Jan Desrosiers, for attending today’s van presentation. The support in the Alberta ALS community is extraordinary.

Introducing the 2017 Red Deer WALK for ALS Ambassador, Donna Strome

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"Walking into the Neurologist’s clinic hoping to hear there was a solution to whatever was causing my symptoms and walking out with a diagnosis of ALS, was definitely not how I had expected that day to go. Even though I was a practicing Registered Nurse, and had worked on a palliative care unit helping others dealing with a terminal diagnosis, I felt totally unprepared to hear one applied to me. I am blessed to have supportive family and friends, and am thankful for a belief that in spite of the storms, I have much for which to give thanks. However, the reality of the situation and the gravity of the diagnosis of ALS did cause me angst. I had many questions and concerns about not only the quantity, but quality of my life over the next few years. The ALS Society quickly became another anchor in the storm. The Society, from Administrators to technicians to liaisons to volunteers and peers, have provided much needed and greatly appreciated support. “You are not alone; we are here to help” – words spoken to me during my first visit with the ALS Society. They were not empty words; the Society has played a vital role in navigating with me through the maze of needs and have provided not only moral and emotional support but many practical physical devices to assist my activities of daily living. I cannot thank them enough for the difference they are making in my life!" - Donna Strome

The ALS Compassionate Heart

The Fifth Avenue Collection is donating $20 to the ALS Society for each ALS Compassionate Heart necklace purchased in Alberta. The ALS Compassionate Heart is a symbol of caring and support for people affected by ALS, the client, family, friends, physicians and caregivers. The ALS Compassionate Heart features 61 Swarovski Crystals each individually encased in a bezel setting. The pendant and the chain are finished in a rich Rhodium Finish. The chain is 20” and adjusts to 22”. It is nickel, lead and cadmium free.

Cost is $59.99 and includes tax and shipping.

2017 Edmonton WALK for ALS Kick-off Brunch

What a fantastic day at this year's Edmonton WALK for ALS Kick-off Brunch! Speakers included Board Member Cathy Martin, Jody Round from the WALK Committee, WALK Ambassador Fred Gillis, and the winner of the 2016 Team Challenge, Cathy Tuckwell. The afternoon finished off with an ALS Society of Alberta themed game Family Feud! Thank you to all who attended the brunch. Your support makes a significant impact within the ALS community.

Introducing the 2017 Betty's Run for ALS Ambassador

Jody Pfeifer

Hans Christian Andersen said, “Just living is not enough. One must have sunshine, freedom and a little flower.” This little quote struck me as being so special and meaningful 15 years ago when I first discovered it. Going through papers and getting organized a month ago, it was rediscovered and this little saying took on a whole new special meaning to me.

My name is Jody Pfeifer. On August 3, 2016, I was diagnosed with ALS. Someone asked me, “Why you?” I responded “Why not me? This disease does not discriminate. If not me then someone else would be getting the diagnosis. It just as easily could have been you. The selection is purely random.” Now I am the face of ALS.

I have lived a full life of fantastic adventures and memories. Having grown up in Vancouver, I was active for most of my life playing team sports, racquet sports, on track teams, jogging and doing lots of skiing. Right out of high school I worked for a brokerage firm for ten years. When the firm was taken over in 1989, I moved to Calgary and never looked back. Little did I know I was about to experience the biggest adventure of my life! My son Ryan was born in 1992 and as a single parent still working in the brokerage business, I bought my first house in 1995. The purchase of that house ended up being the best trade I ever made! I still own that little house to this day and my son is living in it at the age of 24. My two greatest accomplishments have become one!

Although the majority of my family lives west of the Rockies, I have tons of “family” in Calgary. The people I’ve met and friends I have made over the years are considered family. These incredible people have shared their lives and homes with my son and I. They’ve been generous with their love and selfless with their caring and time. I love everyone in “my family” very much and it is this group of people who are now a part of my latest journey.

Having been fiercely independent my whole life, I’ve gone from being able to do/fix anything (tools included) to not being able to use an elastic or open a Ziploc bag. With each ongoing muscle twitch I think of the paralyzing, insidious dark journey this disease is taking through my body and wonder about what I won’t be able to do tomorrow? We all have to go sometime; it’s just a matter of when and how……

For the most part I’m staying positive, thankful for having so many incredible people in my life and having the gift of time to tie up loose ends. I’ve discovered that the littlest things have so much more meaning now - a little flower, dogs playing, fresh air and the warmth of the sun. One must have freedom, yes, but one must also have the freedom of their bodies to move to continue to take you on more adventures…..

Just being alive in your life isn’t enough. LIVE your life because none of us knows if someday all you will have left is the memories of a life well lived…..

Jody Pfiefer, 2017 Ambassador for Betty’s Run for ALS

Introducing the Edmonton WALK for ALS Ambassador

“Hello, my name is Fred Gillis and this year I am honoured to be the ALS Society of Alberta Ambassador for the Edmonton WALK for ALS on June 10, 2017. I am a law enforcement officer with the RCMP and for the past 29 years I have worked in various locations across Canada. I am but one of the “Many Faces of ALS”. On December 1, 2015, I was diagnosed with ALS. I had been losing my arm strength and coordination for almost a year. It was devastating news and acceptance was difficult because you learn right away that ALS affects everyone around you; your family, your friends and your career. We immediately began to focus on the way forward which included education, communication, support and physical therapy. Since my diagnosis I have been getting support and assistance from the University of Alberta ALS Multidisciplinary Clinic team, the ALS Society of Alberta and the ALS Edmonton Society Support Group. ALS continually makes me adapt to the progression of the disease and I cannot stress enough how grateful I am to be able to pick up the phone and have someone understand my situation and help me come up with solutions to make living easier. I have only two words to describe the ALS Society of Alberta – love and support. Most of this support and assistance would not exist if it were not for the generous financial support by Canadians. I am taking part in two ALS clinical research trials, one of which is spearheaded by Dr. Sanjay Kalra, co-medical director of the Alberta Health Services’ ALS Clinic in Edmonton. Dr. Kalra and his research team are using Magnetic Resonance Imaging (MRI) technology to study and learn about changes in the brains of people with ALS and to track the progression of the disease in hopes of developing a better way to detect and ultimately cure ALS. ALS research gives me hope that we will one day find a cure. This is all about Canadians helping Canadians. I sincerely hope everyone will come out and support the 2017 Edmonton WALK for ALS!"

Songs for Ken

To say we had an amazing weekend at Songs for Ken would be an understatement. This two-day concert raised a tremendous amount of funding and awareness in both Calgary and Fort Macleod, and brought the community together for a night of music and memories. Our sincerest gratitude to Brooke Wylie, The Polyjesters, Tanner James, The Sadler Brown Band, Oscar Lopez, Maureen Chambers, Randall Wiebe and the amazing organizer, John Wort Hannam. We could not be more grateful for the support within the Alberta music community. This was the third annual Songs for Ken event, which began in honour of John Wort Hannam's childhood friend, Ken Rouleau, who lived with ALS.

An Evening at Rogers Place!

Thank you to the Edmonton Oilers Community Foundation for providing one of our families with deluxe Oil Kings tickets at Rogers Place! Pictured in the photos are Helen Banks, her husband Jim, son-in-law Ryan and granddaughter Eilidh!

Proud recipient of the St. Albert Community Foundation grant

"Amyotrophic lateral sclerosis, abbreviated as ALS or otherwise known as Lou Gehrig’s disease, is unpredictable in many ways. It can make one’s physical abilities dramatically different from one day to the next.

That’s why the ALS Society of Alberta keeps a warehouse literally filled with different types of accessibility equipment to lend out to those who need it. Actually, it has two: one in Edmonton and one in Calgary. The ALS Society was named as a recipient when St. Albert Community Foundation gave out its annual grants last month."

Click here to read the rest of the article from the St. Albert Gazette

ALS Ice Bucket Raffle with the Calgary Flames!

We are still smiling after the incredible night spent with the Calgary Flames "Better Halves" at an amazing fundraiser. Each player raffled off a signed ice bucket with a prize included, leading to awareness across the entire Saddledome. A special thank you to Mikael Backlund and Frida Engstrom for your incredible support of the Society. You have made such a significant impact!