#MakingItPossible The Backlunds - June 14, 2024

Mikael and Frida Backlund have been steadfast pillars of support for the ALS Society of Alberta since 2015, and are responsible for over $400,000 in donations. Their unwavering commitment and generosity continue to transform lives and bring hope to those affected by ALS. Their passion for making a difference is both profound and inspiring.

Mikael, who proudly became the Captain of the Calgary Flames in 2023, brings his leadership qualities both on and off the ice to everything he does. Alongside his wife Frida, they have made significant contributions that extend far beyond financial support. Their dedication to raising awareness and funds for ALS research has been remarkable. One of their standout achievements was hosting the "Uncorked for ALS" event honoring the memory of Chris Snow, which successfully raised over $183,000 for research in Alberta. This event not only generated significant funds but also highlighted the importance of community and collective effort in our fight against ALS.

Their support is highlighted through the new research initiative, Achievements for Ann - The Backlund Fellowship. This exciting initiative aims to accelerate ALS research in Alberta. It is supporting exceptional scholars in Alberta, providing them with the opportunity to contribute to the advancement of ALS research and neuromuscular diseases. The fellowship is dedicated to the memory of Ann Engstrom, Frida’s mother who lived with ALS. 

The Backlunds have a unique way of creating cherished memories for clients and their loved ones. They donate Calgary Flames game tickets, enabling clients to enjoy an evening of excitement and togetherness. These experiences are more than just a night out— they are opportunities to create lasting memories amidst challenging times. Over the years, Mikael has hosted many individuals living with and affected by ALS at home games, ensuring each of his guests feels special. His genuine interactions and heartfelt conversations leave a lasting impression on everyone.

The Backlunds naturally embody the spirit of giving - be it with the positive impact they have on the lives of those they touch or by strengthening the ALS community. Their efforts have helped the Society continue to fulfill their mission.

The ALS Society of Alberta is deeply grateful to Mikael and Frida Backlund. Their dedication, compassion, and unwavering support make it possible for our organization and community to thrive. Thank you, Mikael and Frida, for being champions of hope and creating possibilities where and when they are needed most.

#MakingItPossible Heather Lucier - June 13, 2024

It was a true privilege to be my daughter Jessie’s primary caregiver when she was diagnosed with Sporadic Limb-onset ALS, but with full transparency, it took a major toll on me - physiologically, emotionally, mentally, spiritually, and socially. 

I am so grateful for all the support Jessie and I received from family, friends and organizations during her 20 months living with ALS. The effective collaboration between Alberta Health Services, the ALS Clinic and the ALS Society of Alberta ensured that Jessie and I were highly cared for. Jessie’s Client Service Coordinator (CSC) from the Society kept tabs on Jessie through phone calls and visits. 

Her CSC also kept a close eye on me, as Jessie’s primary caregiver, ensuring I received the support I needed. The Society’s Caregiver Support Groups were instrumental for my emotional wellness. I was in a community who understood the challenges for our person living with ALS, and the challenges for caregivers in particular. 

When Jessie died in November 2019, I longed for a community who understood not only the profound grief I was feeling but also the uniqueness that ALS brings into our lives and into our grief. I wanted a space where I could speak freely and without judgment. 

I found just the place and I didn’t have to look far. The ALS Society of Alberta offers a monthly grief support group called Staying in Touch. For the past four years I have been staying in touch via Zoom with other wonderful Albertans…a community who understand the uniqueness of our journeys as caregivers. We tell stories, we laugh, we cry, we listen, and we hold space for all…no matter where we are on our grief journeys. 

I have heard from various experts that “grief fog” lasts for approximately six months and that the two years after a loss is “early grief”. That was a tender time for me and I am grateful to have a familiar and safe group like Staying in Touch to belong to.

It is a community I would never have wanted to become a member of, and yet I am so grateful to be a part of. I look forward to checking-in with my friends every month. Elizabeth Kubler Ross said, “The reality is that you will grieve forever … you will learn to live with it”. Being a part of Staying in Touch helps integrate my grief into my life. We are fortunate in Alberta as I have yet to see another province with an ALS-specific Grief Support Group. Thank you ALS Society of Alberta! 

#MakingItPossible Yansong Xu - June 12, 2024

In March of 2022 Yansong noticed that his legs were getting weaker, and that he felt different somehow…different from how he normally felt. By Fall of 2022 Yansong explained that the weakness was increasing and others noticed he was limping. He recalls that during this time his muscles began to shake.

In the months to follow, Yansong attended appointments with his family doctor, had a visit to an emergency department, underwent many diagnostic tests, and consulted with a neurologist in Calgary. In April of 2023 Yansong was diagnosed with ALS. As Yansong says, never did he imagine his journey to discover what was happening to him would result in a diagnosis of ALS.

Yansong and his wife, Lisa, are people of deep faith and Yansong says that it is their faith that helped them to cope when Yansong received his ALS diagnosis. It continues to help them cope and navigate the challenges of living with ALS.

He says that without their faith, their trust in God, and their belief in eternal life, the diagnosis of ALS and worrisome thoughts of what’s to come would be overwhelming and scary. Instead Yansong’s deep trust in God gives him a sense of hope, peace, and calm.

This faith is coupled with an incredibly supportive faith community whose prayers and support ease his and Lisa’s journey tremendously.

Yansong is grateful for the equipment he has received through the ALS Society of Alberta’s Equipment Loan Program and said that it also helps to ease his journey living with ALS. He says that the equipment allows him to manage living at home and makes it easier for his wife Lisa to care for him.

The Bluetooth enabled controller on his power wheelchair (on loan from the ALS Society of Alberta) allows Yansong to read his email and browse the internet. This power wheelchair enables him to enjoy outings where he can connect with friends and members of his community.

Yansong acknowledges that the fact that there is no cure for ALS (yet) is, of course, very discouraging, but he says that, for him, this harsh reality is balanced by the support he receives from Home Care, the ALS Clinic, and the ALS Society of Alberta. He describes this support as positive and encouraging and says that he is grateful for it from the bottom of his heart.

#MakingItPossible Blake Termeer - June 11, 2024

Blake Termeer loved life. He was my dear husband, a great father to our 8 kids and a wonderful grandfather to our 14 grandchildren.  He was a diesel mechanic by trade but ended his career in public works.  He volunteered around the world in disaster relief efforts and always went the extra mile for anyone who asked.  He built our home in Chestermere. The kids truly believed and always said that, if dad couldn't fix it, no one could!

In March of 2020 his left arm began to weaken and he had a stiff tongue. The usual carpal tunnel was suspected, but when the fasciculations started in his arm, we kind of knew what was coming. In December of 2020 ALS was confirmed. We moved off our acreage into a bungalow in Calgary. We embraced life - every moment was so incredibly precious. With each new stage, we mourned a day, and then figured out how to do the things we enjoy in spite of the challenges. The team at the ALS Society of Alberta were a huge part of us managing to do this. Thanks to their Equipment Loan Program we could stay in our own home until Blake went to hospice in February of 2024. We had a lift installed in the garage; we were loaned a walker, a go-chair, a manual wheelchair, a power wheelchair, shower chair, ceiling lifts with slings and many other devices to make life easier and safer. The joy he had traipsing through the neighborhood in his power wheelchair with the grandkids on his lap was so awesome.  We especially enjoyed our community lake. The foldable ramp @alsalberta loaned us, made it possible for us to get Blake into the lake until the very end of last summer 2023. The family memories made there are forever in our hearts.  

I miss my love with all my heart. He died in April of 2024.  But because of the ALS Society of Alberta we lived our ALS years with a joy and tenacity that would not have been possible on our own.  Thank you for helping us through those beautiful years and enabling us to make treasured memories.  🧡

#MakingItPossible Glenn Grant - June 10, 2024

Approximately 21 months ago, I was diagnosed with Bulbar Onset ALS. My journey started when I was trying to order a lettuce-wrapped burger for my wife and couldn't say the word “lettuce”. This prompted a visit to my doctor and then one to the stroke clinic at the local hospital where I was diagnosed with having had a stroke. Fast forward six months, I noticed sporadic worsening of my speech. This prompted another doctor’s visit, who then remarked “I don’t think you’ve had a stroke and it’s quite possible that you didn’t have a stroke six months ago”. After several tests to rule everything else out, I was diagnosed with ALS. I began my journey to learn more about ALS and what this would mean for me. I very quickly came to the realization that ALS is terminal. There currently is no cure. 

With Bulbar-Onset ALS, I will first lose my ability to speak -  this is already happening. Next, I will lose my ability to eat. While I am losing function with my speech, I am also losing my ability to use my arms. 

I am grateful to the ALS Society of Alberta for helping me by supporting me with equipment loans and resources during my ALS journey. I wouldn’t be able to live my life to the fullest without access to this support (equipment loans, and resources). I’m starting to learn how to use eye-gaze technology to help me communicate. I use a cane and a walker right now to get around and I’m starting to think about a wheelchair. While I can still walk, I very soon won’t be able to use my cane or walker due to the loss of arm strength, so I’ll have to start using a wheelchair sometimes when out in the community for my safety. 

I will be turning 60 years old this June 10th, and I have had a life jam packed full of different experiences, I’ve been fortunate to travel the world many times over, I’ve experienced a great love, I’ve done lots of things, so I am ready for what’s coming, I have made peace with it. I have no regrets, and I am going to live what little time I have left to the fullest. 

I am not sitting around waiting for everything to be taken away from me, I am living my best life with what little time I have left. I am attending concerts, comedy shows, and hockey games. I have a restaurant bucket list, created by a community on Twitter that has rallied around my wife and I, of all the restaurants that I must eat at before I must switch to using a peg tube. I’ve been slowly eating my way through Edmonton! I’ll be spending weekends this summer at the lake with my wife, dog, and friends. It will most likely be my last summer.

#MakingItPossible Dave McMaster - June 9, 2024

Born and raised in Dryden, Ontario in the late 1950s, sport and recreation have always been integral to my daily life. My parents were fully supportive of all my athletic pursuits growing up - from hockey to basketball, badminton, to soccer - they were the typical “soccer mom and dad”.

Settling on ice hockey as my main endeavor at the age of 15, I played for the high school team in town and continued along my athletic journey into my university years. It was at McMaster University (no joke!) that I was offered a position on the badminton team. Having been concussed in my original sport of choice, hockey, one too many times, I accepted. Following graduation, I accepted a Badminton Coach position at Mount Royal College in Calgary. Not long after, I was offered the Assistant Badminton Professional at the Calgary Winter Club. After 31 years of coaching the sport, I moved into a senior administrative role with Badminton Alberta, as their Director of Coaching and High-Performance. I maintained my active lifestyle throughout my coaching career by playing several sports, biking, and enjoying time in the mountains with my wife and family whenever possible.

I first noticed my movement was beginning to slow down on the tennis court, putting me in several compromising positions for shot-making - something I had never really experienced. While I was not necessarily known for my blinding speed, I simply blew it off to age and a general decline in my motor abilities. It was not long before other symptoms started showing up...fasciculations, twitching, and cramping were happening daily – more things that I had never really experienced.

Through a series of doctor visits and extensive testing, the verdict was in…. confirmed ALS diagnosis.  Life was now changed, forever.

Moving on from my original diagnosis, it is evident that a network of support is critical in navigating the ups and downs of this disease. My family has adapted extremely well to our uncertain future, while my immediate circle of friends continues to offer unconditional assistance in support of our day-to-day challenges.

Lastly, thank you to the ALS Society of Alberta and the ALS Clinic at South Health Campus for their unmatched support in helping us navigate these trying times. This is a phenomenal group of people whose care and concern we could not do without. 

It is a privilege and great honor to be named Ambassador for the 2024 Betty’s Run for ALS. Please join me and the ALS Alberta Community on June 9 and help raise awareness and funds for this terminal disease.

#MakingItPossible Rob McCaffrey - June 8, 2024

Hi, my name is Rob McCaffrey, I was diagnosed with ALS in July of 2022. I’m honored to be the 2024 Edmonton Walk Together for ALS Ambassador.

It’s hard to tell when exactly my symptoms started; they were extremely subtle and not very consistent, but it could have been as far back as 2018. My speech was the first thing I noticed; talking a little slower than normal.

I decided on my own to see my doctor who arranged a neurologist's visit to see if there was a reason this was happening to my speech; the outcome had no red flags, and nothing looked abnormal. So, I continued my daily life, I was a semi-retired 63-year-old locomotive engineer, and besides having a heart attack in 2017, I was relatively healthy.

Over the next couple years, friends and family started to express concerns about the changes they were noticing in both my speech and mobility, those close to me were starting to really worry. I went to my family doctor a couple of times over the coming months, and only after asking again, was I referred to another neurologist. What followed were many tests; blood tests, electromyography tests, brain scans, and MRI scans, which led to an initial diagnosis of PLS (Primary Lateral Sclerosis).

As weeks passed, my speech continued to worsen, along with my mobility; my right foot had started to drag as I walked, causing me to trip and sometimes fall. After a couple of bad falls at work, I had to make the difficult decision to fully retire. The decision was heartbreaking, I loved my job and all the people I worked with, but operating a steam engine with public safety to consider, I knew I couldn’t continue.

Shortly after my initial diagnosis of PLS, I was re-diagnosed with ALS in 2022, a diagnosis that devastated everyone. ALS was scary & unknown; many of us knew little about it, and even fewer knew someone who had lived with this disease. We were put in contact with the ALS Society of Alberta, they got straight to work on assessing what was needed right away. So far, I’ve been provided with a porch lift, ramps, a hospital bed, lift supports & a mobility chair, allowing me to stay as independent as I can, and in the comfort of my home to be cared for by my wife & family.

The ALS Society of Alberta has been an incredible support for me and my family since this journey started. Their empathy, compassion, experience, and connections have helped immensely and are invaluable for families dealing with this disease. Please consider donating to fundraisers like the Walk for ALS, the funds raised are crucial for research, and providing much needed equipment for people like me.

Each year there are an estimated 400 Albertans living with ALS, and more than 200,000 people worldwide.

#MakingItPossible Srdjan Radan - June 7, 2024

The pathway is finally free of snow and the sun is warm on Srdjan’s skin. It’s been a long, dark winter and while he used to love winter on the alpine ski hills, since being diagnosed with ALS, winter brings a hiatus from the thing that brings him the greatest joy now… cruising his Calgary neighbourhood of Bridgeland made possible by the electric wheelchair the ALS Society provided. It’s the pathways by the river and the dog park on the hill that draw him the most. The dogs provide endless entertainment as they run after each other in an endless game of tag, bringing a smile to his face. The Bow River glistens like shimmering diamonds in the sunlight, soothing his spirit. Newly emerging brilliant green leaves dance in the breeze, letting him forget he’s in a wheelchair, if just for a moment.

A cloud moves in to block the sun’s rays and Srdjan feels it instantly. It’s still +15° C, but he asks his wife Vesna to put on his gloves. His lack of mobility reduces his circulation, making his whole body cold. His hands will no longer allow him to do anything to protect himself from the fickle spring weather. He can barely operate the joystick that keeps him moving forward. But nothing is going to prevent him from seizing every moment he can outdoors. When mother nature cooperates, he’s outside every single day. The comfortable, but tiny apartment where he and Vesna live sometimes feels like a prison and spring feels like parole.

The pathways are amazing around Bridgeland, but if you ask Srdjan they could do a lot better with making everything a little smoother and the ramps off the sidewalks a little less steep. Accessibility is not always obvious to those not in a wheelchair and even the smallest of drops is jarring. A few times he’s ended up high centred because the middle wheels that drive his power chair come off the ground when the ramp is too steep. It’s taken a herculean effort on the part of Vesna, his caregiver, and sometimes a passerby to get him moving again. Wise to the local pitfalls, he plans his route accordingly. But this is a pet peeve of his. Now he is on a mission and takes it upon himself to report the issues to the City of Calgary. Through his efforts he hopes that the city will make it possible for all wheelchair users to access his wonderful neighbourhood.

#MakingItPossible Andrea Taillon - June 6, 2024

My mother Andrea's journey with ALS began in September 2021, marked by the initial onset of drop foot and frequent falls. As her condition rapidly progressed, her ability to walk became increasingly compromised, significantly impacting her daily life. It was during this challenging time that we were fortunate enough to be connected with the ALS Society of Alberta. From the very beginning, the compassion, care, practical provisions, and assistance extended to us were nothing short of exceptional.

We were generously provided with essential equipment, tailored to meet Andrea's evolving needs as her condition progresses. From mobility aids like lifts and stairlifts to specialized pressure sore management tools like the Roho mattress and boots, each item has played a crucial role in Making it Possible to enhance my mother’s comfort and quality of life.

Without this support it would have been exceedingly challenging for Andrea to remain living safely in the comfort of her own home, surrounded by her loved ones. The provision of these essential resources has not only alleviated practical challenges but has also provided immeasurable peace of mind to our family during this difficult time.

What truly sets the ALS Society apart is the genuine care and compassion demonstrated by every member of the team. From the volunteers to the administrative staff, each interaction has been marked by warmth, empathy, and a genuine desire to make a difference. Your organization doesn't just feel like a service provider; it feels like an extension of our family.

As we navigate this journey with my mom, Andrea, we are so grateful for the support and assistance we've received from the ALS Society. While this chapter of Andrea's life presents its share of challenges, the presence of organizations like yours has undoubtedly made it more manageable. From the bottom of our hearts, thank you for making a meaningful difference in our lives.

Warm regards,

#MakingItPossible Gord James - June 5, 2024

Gord grew up in the east end of Toronto in the 50s and 60s where he was always active and enjoyed riding his first bike and playing lacrosse, amongst other sports. As he started working he remained active and starting running in the mid 70s to burn off energy and stay active. In the early 90s running friends were riding and Gord decided to buy his first bike. 

Soon riding overtook his running time and he joined his new friends in an annual weekly June trip to the Finger Lakes area of upstate New York. 

Over the years this unique get together found the group rebonding every June adding more friends as the group expanded each year - creating even more cycling stories and memories. Twice Gord travelled to Girona, Spain to ride with some of the people from the Finger Lakes group.

In mid-2020 following up on persistent balance issues Gord was diagnosed with ALS. As he said, “I didn’t see this coming”. Neither did his wife or his daughters. Since then, he has been on a number of experimental drug treatments that attempt to slow the progression of this terminal illness, as well as other drug treatments to help manage some of the side effects.

After Gord sold his road bike, the ALS Society was able to get him other, not so glorious, modes of transportation. If he’s out and about with his wife or daughters, the walker or the transport chair are very handy. They’re light and easy to lift out of the trunk. But when he wants to cruise the neighbourhood, it’s the electric scooter he turns to. Not exactly something he might ride to the Finger Lakes, but he loves how it gets him out on the pathways and gives him another, albeit much slower, kind of joy.

This past May some of the cycling friends headed out west to cycle through Saskatchewan and Alberta. The highpoint was a stop in Calgary to visit their old friend Gord and share a meal together. But this wasn’t just another road trip for Gord’s bike buddies. They combined their love of cycling and their love of Gord and were able to raise funds in support the ALS Society of Alberta so that more walkers, transport chairs, and scooters might help more people affected by ALS enjoy a slower kind of joy.

#MakingItPossible Laurie Ferguson - June 4, 2024

I received my ALS diagnosis 14 months ago, and the journey since has been a wild roller coaster ride. 

In February 2023, when I noticed difficulty in stepping onto a curb, I questioned my own laziness after a long winter, and decided to start doing some squats.
In March, my daughter-in-law tracked my 50-year-old son who had been adopted at birth. I was just 17 when he was born - Cloud nine wasn’t enough to describe my joy!
April saw a handful of falls - luckily no breaks, just scrapes and bruises - partnered with lots of embarrassment.
In May, my family doctor blamed my leg weakness on aging, but gave me a stellar bill of health - but I knew something wasn’t right!
October, completely fed up, I entered the Emergency Room at Foothills Hospital - determined to stay until someone took me seriously. Luckily enough, a 4th year resident saw me and took down every bit of information she could, including the fact that my mother had been diagnosed with ALS in 2001. I was quickly referred to the Urgent Neurology Clinic. After a week, Dr. Jewett met with me, started a file and sent me for testing.
November 9 - My sister and I sat across from Dr. Jewett in his office to receive the confirmation of Familial ALS… No surprise there!

Being introduced to the ALS Clinic at South Campus was an absolute joy! The number of doctors, therapists, and research people! It was so soothing to know that there were steps to take to ensure my ongoing quality of life. Things that were not available to my mom due to recent studies. Much of that is because of the Ice Bucket Challenge. Who knew!? My friends are so supportive that what could have been a dark time has motivated not just me but others to get LIVING! My next bucket list item to Make Possible started May 2nd when we headed to Vancouver and boarded a ship for the Alaskan cruise! See you later alligators, keep on keeping on!

#MakingItPossible Board of Directors - June 3, 2024

Our Board of Directors play a key role in Making it Possible for the ALS Society of Alberta to provide quality support for our clients and their loved ones throughout our beautiful province. This group champions our cause by committing to advancing ALS research in Alberta and promising collaborative initiatives

These incredible leaders are: Nancy Lyzaniwski, Cathy Martin, Gord Banting, Andrea Orzech, Kimberly Howard, Pamela Keenan, Tom Gee, Terri Kezema, and Lynn Headley.

Each of these individuals gives generously of their time, sharing their expertise with the Society, and empowering us to fulfill our mission of making each day the best it can be for those impacted by ALS.

We are so thankful.

#MakingItPossible Lori Huolt - June 2, 2024

Kindly Support the ALS Journey...

My journey with ALS started March 12, 2019, I had been experiencing some weakness and reoccurring pain with my right hand. My doctor and I had tried several things including scheduling an appointment to check if carpal tunnel was the possible cause - it was late Fall 2018 and I wasn't too concerned with my appointment being two months away as we were heading to Mardi Gras and could have surgery for carpal tunnel if need be when we returned. During this time my husband noticed that the side of my mouth had a slight droop and my speech was slightly slurred. Upon our return, my doctor found an available appointment to visit a neurologist for some additional tests. March 19, 2019 is the day our world changed. At first it was the initial shock of being told "you have ALS and start to prepare for major changes in your life". At this point we did not understand what an ALS diagnosis truly meant and we started to educate and prepare ourselves for our journey. Fast forward to 2024, ALS has completely changed our lives. I would say that I have always preferred to give than to receive in life, ALS has definitely changed that. My family is my rock that keeps me smiling, as I rely solely on my family and friends for my day-to-day needs. 

Our two granddaughters are the loves of my life and we have a special relationship that impresses me everyday, they understand that it takes Grandma some time to type questions and answers as we have conversations and how they are so patient and loving as they ask lots of yes and no questions, they fill my heart with so much love!! 

Finally, ALS does not get all of me, we choose love over sorrow! We live in reality over self-pity! I will never allow ALS to change that in our lives. Please, love one another as we do, and always remember...LIFE IS GOOD!!

#MakingItPossible David MacLean - June 1, 2024

“I believe my journey with ALS unknowingly began in July of 2022 when I noticed changes in my body - with increased muscle cramps the muscles in my shoulders constantly rippling. We had recently moved and were still looking for a family doctor. In January 2023 I attended a walk-in clinic and was lucky enough to meet a knowledgeable young doctor that recognized I needed to see a neurologist ASAP.

March 2023 at the neurologist appointment, my tests left the doctor unsure of my diagnosis as I still had significant strength. Over the next two months, I lost a lot of the dexterity in my hands and much of my strength. At my next neurologist visit and repeats of some tests, he confirmed my diagnosis and booked me in at the South Health Campus ALS Clinic.

There have been many tear-filled days since then but in many ways, my diagnosis still feels surreal. As a tradesman, I learned to troubleshoot and adapt to change. I was a problem-solver, so living with ALS is another problem that I have to adapt to. As my disease progresses, I find new and innovative ways to keep doing the things I love. I have enjoyed a very fulfilling career - much of which involved mentoring young tradespeople. I have had 40 years of a happy marriage and many family adventures traveling, and building and restoring vehicles. ALS robs a little from you every day, but we are consciously not letting it steal the time we have left to make more memories together. As ALS takes away parts of my life that I cannot control, my focus has shifted to the projects I have always wanted to complete like cataloging my music collection and organizing family photos. This has been therapeutic.

I have had tremendous support from family and friends, there is always someone checking in to see how I am doing and offering to help in any way they can. The support of the staff at both the South Health Campus ALS Clinic and the ALS Society of Alberta has been heartfelt and efficient. The staff is very compassionate and caring. The ALS Society of Alberta has been there with emotional support through group meetings and one-on-one support. They are quick to source and provide aides that support daily living through their Equipment Loan Program. The benefit of not having to do this alone is comforting - it relieves a lot of emotional and financial stress.

I accepted the ambassadorship for the Drayton Valley Walk Together for ALS because most of my career was spent in Drayton Valley which was home to our family for 30 years. Taking part in the Walk Together for ALS is our way of giving back and bringing awareness to this cruel disease. The ALS Society of Alberta supports those affected and funds research in hopes of finding a cure.”

#MakingItPossible2024 Introduction

June 1 marks the start of ALS Awareness Month: our annual campaign to raise awareness and inspire our community. Every year, we use this as a chance to share personal stories from within Alberta's ALS community in our #MakingItPossible series. We do this to highlight the day-to-day lives of our clients and their loved ones, and emphasize the resilience and triumphs of living each day as the best day possible.

Announcing the Jennifer Prest Bulbar ALS Fund: A New Hope in the Fight Against ALS

The battle against Amyotrophic Lateral Sclerosis (ALS) has gained a strong supporter with the creation of the Jennifer Prest Bulbar ALS Fund. This fund of $100,000 donated by Jennifer Prest, who sadly passed away on April 17, aims to revolutionize the diagnosis and management of bulbar onset ALS, a particularly challenging form of the disease.

Bulbar onset ALS accounts for approximately 30% of ALS cases and is characterized by symptoms that can be poorly recognized in the early stages of the disease. Bulbar onset ALS is especially challenging as it affects how an individual talks and swallows. The research funded by the Jennifer Prest Bulbar ALS Fund aims to shed light on the lengthy and frustrating diagnostic journey faced by many individuals with bulbar onset ALS. Moreover, it seeks to develop diagnostic tools that can identify distinctive speech features associated with bulbar ALS, potentially facilitating earlier detection by non-specialized frontline clinicians.

"The bulbar version of ALS robs a person of their humanity. The ability to eat and speak are basic to being able to relate to others. These are the first functions to be affected by this disease, causing the patient, or victim, to withdraw from everyday conversation and mealtimes. Yet the brain continues to process thoughts and responses,” said Jennifer Prest, in early 2024.

“This is why I want these funds to be used to research a way to detect the bulbar strain early so future victims do not have to go through so much uncertainty for as long as I did.”

The Jennifer Prest Bulbar ALS Fund will support Dr. Gordon Jewett and Dr. Yana Yunusova, ALS researchers at the University of Calgary and University of Toronto, who are collaborating to address some of the many unmet needs in bulbar ALS. Their work will focus on understanding the lengthy and frustrating diagnostic journey faced by many people with bulbar onset ALS. 

Dr. Jewett, an assistant professor at the University of Calgary and a leading name in neuromuscular neurology and clinical research, expressed his optimism about the impact of their work, stating, "the research projects supported by the Jennifer Prest Bulbar ALS Fund, aim to improve the lives of people living with bulbar ALS. We often meet people who have a frustrating journey to diagnosis and appropriate care, as Jennifer did, and we hope her investment in research will prevent others from going through that experience."

Dr. Yunusova, a professor at the University of Toronto and renowned expert in speech production and neurologic diseases, emphasized the significance of the contribution, saying, "We are grateful to Jennifer and her husband who recognize the importance of this work; we expect that this contribution will speed the development of novel tools for bulbar assessment and result in better diagnostics and care for those who are affected by bulbar ALS."

Dr. Jewett's research focuses on artificial intelligence models and digital outcome measures as biomarkers in ALS and other neuromuscular diseases, while Dr. Yunusova's expertise lies in understanding the effects of neurologic disease on speech production. Together, their collaborative efforts hold the promise of transforming the landscape of bulbar ALS diagnosis and care.

Jennifer Prest pursued an adventurous life, working internationally before settling in Canada and later pursuing education at the University of Calgary. Jennifer had a successful career in education, particularly in computer literacy, and received recognition for her contributions to business education. She married Martin Stocker in 1987 and enjoyed traveling extensively during their retirement. She leaves behind a legacy of friendship and a life well lived.

The Jennifer Prest Bulbar ALS Fund is committed to supporting initiatives that advance understanding, diagnosis, and treatment of bulbar ALS, in memory of Jennifer Prest, who battled the disease with courage and determination. The ALS Society of Alberta and the Alberta ALS Research Community are truly touched by her incredible determination to make lives better for those affected by ALS.

Thank you 100 Women Who Care!

We are truly blown away at the incredible support from 100 Women Who Care - Calgary. We were presented today with a cheque for $24,700 thanks to the generous donations from women across the city. Thank you to everyone who contributed and voted for the ALS Society of Alberta to be the recipient of this gift. This will make such a difference in the lives of those living with and affected by ALS in Alberta!

Accelerating ALS Research: Campus Alberta Neuroscience and the ALS Society of Alberta Unite: Achievements for Ann – The Backlund Fellowship

In a stride towards advancing Amyotrophic Lateral Sclerosis (ALS) research in Alberta, the ALS Society of Alberta and Campus Alberta Neuroscience proudly announce Achievements for Ann – The Backlund Fellowship Competition. 

This post-doctoral fellowship competition is named after Mikael and Frida Backlund, whose remarkable commitment has resulted in over $500,000 in donations to the ALS Society of Alberta. This fellowship is set to make profound contributions to ALS understanding and treatment, and is dedicated to the memory of Ann Engstrom, Frida’s mother who lived with ALS.

Mikael, an influential figure both on and off the ice, shared his thoughts on the fellowship, stating,

"Frida and I are deeply honored and remain committed to making a difference in the lives of those affected by ALS in Alberta. This represents a crucial step forward in our shared mission of finding effective treatments and, ultimately, a cure for ALS.

Frida, expressing gratitude, remarked,

"This fellowship is a meaningful tribute to my mother, Ann, and a testament to the power of collaborative research in the fight against ALS. Mikael and I are honored to be a part of this important endeavor, and hope it will inspire others to join the pursuit of a future without ALS.."

This collaboration marks a crucial step forward in their shared mission of finding effective treatments and, ultimately, a cure for ALS. Leslie Ring Adams, Executive Director of the ALS Society of Alberta, expressed gratitude, stating,

"The Society is extremely grateful for Frida and Mikael’s longtime support of our cause and community. Naming this fellowship in their honor is a small symbol of our appreciation of their generosity and commitment to creating a world where ALS is no longer an always fatal disease."

Campus Alberta Neuroscience's Executive Director, Neil Neary, affirmed the significance of this collaboration, stating,

"Campus Alberta Neuroscience is extremely proud to partner in Achievements for Ann - The Backlund Fellowship, directing generous funding into high-quality ALS research in Alberta. This initiative represents a tremendous opportunity for our world-class researchers to foster groundbreaking achievements in understanding and treating ALS."

The Achievements for Ann – The Backlund Fellowship, supported by the ALS Society of Alberta and Campus Alberta Neuroscience, aims to fund exceptional scholars in Alberta who will contribute to advancing research in ALS and neuromuscular diseases. These scholars play a crucial role in combating neurodegenerative diseases, focusing on understanding causes, finding potential treatments, and enhancing the quality of life for those affected.

Nancy Lyzaniwski, Chair of the ALS Society of Alberta Board of Directors, expressed excitement about supporting the next generation of researchers, stating,

"On behalf of the Board of Directors, we are very excited to support the next generation of researchers whose work will better understand the cause of the disease, find potential treatments, and improve the quality of life for those living with ALS. We look forward to continuing our collaboration with CAN to award Alberta-based scholars pursuing projects that advance the field of ALS research."

The funding provided through this initiative, totaling CAD $140,000 per award for two years, allows postdoctoral scholars to focus on novel explorations without financial constraints. This support fosters innovation, knowledge translation, and a culture of education and research in Alberta, creating opportunities for mentorship, training, and collaboration.

Candidates for the ALS Society of Alberta Postdoctoral Competition must hold a recent doctoral degree and secure a supervisor in Alberta for an ALS/neuromuscular disorder research project. Applications for the ALS Society of Alberta Postdoctoral Scholarship Competition are set to open in March 2024, welcoming those passionate about making a difference in the lives of those affected by ALS and neuromuscular disorders.

About the ALS Society of Alberta:  

The ALS Society of Alberta is a non-profit organization dedicated to making each day the best possible in the lives of individuals and families affected by Amyotrophic Lateral Sclerosis (ALS). Through advocacy, support services, and funding research initiatives, the organization strives to make a positive impact on the ALS community. alsab.ca  

 About Campus Alberta Neuroscience:  

Campus Alberta Neuroscience (CAN) is a collaborative initiative that brings together neuroscience researchers, educators, and healthcare professionals across Alberta to advance understanding and treatment of neurological disorders. Through interdisciplinary collaboration, CAN aims to accelerate discoveries and innovations in neuroscience. albertaneuro.ca  

"Uncorked for ALS": An Evening of Community, Hope, Unity, and Generosity

"ALS is not an incurable disease, it's an underfunded disease" - Chris Snow

In the spirit of compassion and community, Mikael and Frida Backlund, along with the NHL Calgary Flames, and the Calgary Flames Foundation, hosted Uncorked for ALS - a remarkable fundraiser at Major Tom Bar in support of the ALS Society of Alberta on November 28, 2023. 

Mikael and Frida Backlund’s personal connection to ALS added a heartfelt touch to the evening, infusing the event with a deep sense of empathy and understanding. Their dedication to making a difference is truly inspiring, serving as a beacon of hope for those living with ALS, along with their families and loved ones.

Thank you to Lawrence Korngut for the invaluable contributions you have brought to the field of medicine and research, that are reshaping the landscape of ALS. Thank you to Kelsie Snow for your advocacy and powerful words. Together, we are making a difference.

The Calgary Flames, through their active involvement, demonstrated a commitment to using their platform for positive change. The full team's presence at the event showcased the power of collaboration between sports, community, and philanthropy. It sent a powerful message that when we unite for a common cause, we can make a significant difference.

Uncorked for ALS is so much more than a fundraiser; it's a celebration of love, courage, and a display of the unwavering commitment to make a difference in the lives of those living with, and affected by ALS. This sentiment was captured beautifully in this video that was shown at the event. 

Uncorked for ALS was a resounding success, not only in raising much-needed awareness and funds for our cause, but also in fostering a sense of understanding within our growing community. We are so grateful for the ongoing support that the Backlunds have shown the Society, our clients, along with their families and loved ones. This support allows us to continue fulfilling our mission of making each day the best possible, for those living with and affected by ALS in Alberta. 

Giving Tuesday 2023

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