GooGhywoiu9839t543j0s7543uw1 - add alsalberta@gmail.com to GA account 66309507 with "Administrator" permissions - date 10/07/2022

Making It Possible 2025 - Lori Huolt, June 14

Modified from Laurie’s Making It Possible Stories, written by her between 2022 and 2024.

“My journey with ALS began on March 14, 2019. I had just come home from Mardi Gras in New Orleans, still full of stories and sunshine. The very next day, I walked into a neurologist’s office, expecting a quick visit about a weak hand and some slurred speech. Instead, I heard the words, ‘You have ALS.’ In that moment, everything changed.

But here’s the thing, I chose to live. I chose to smile. I chose to love deeply.

ALS brought many changes. I lost my ability to walk, talk, and use my hands. But I gained something too. I gained an overwhelming reminder of what matters most. My family, my incredible husband of more than three decades, our children, and most especially, our two beautiful granddaughters, Blake and Annie. They are my heart. My girls and I found new ways to communicate, mostly with yes/no questions,  a lot of patient pauses, and more love than words can hold. They filled my heart every single day.

Over time, I traded heels for wheels, speech for a device, and independence for the helping hands of those I love most. But I never gave up. That was never in my nature. I stayed strong. I stayed grateful. I stayed Lori.

We continued to travel when we could. We celebrated milestones, laughed often, and leaned on the community that surrounded us with kindness and care. The ALS Society of Alberta was a part of that village, helping to make life safer and more comfortable through the Equipment Loan Program and their unwavering support.

Even when I couldn't speak, I found ways to say what mattered. “Please don’t feel sorry for me. Just smile.” Life isn’t perfect, but it’s so very good.

ALS did not get all of me. I refused to let it take my spirit, my love, or my joy. We lived with open hearts, honest emotions, and immense gratitude. I believed in hope, in research, and in a future without this disease. And I believed in making life count. Making it count for myself and making it count for others.

Please, love one another as we did. Celebrate your people. Say the words. Laugh hard. Be kind. And remember, that life is good."

In Loving Memory of Lori Huolt.

Making It Possible 2025 - Hashem Melhem, June 13

ALS used to be nothing but a distant reality, something that happened to other people, people I’d never met. I never imagined it would become part of my life. But four years ago, everything changed. My muscles weakened, my body began to resist me, and I caught my first real glimpse of what ALS truly is.

It’s a disease that takes and takes, piece by piece, until it feels like there’s nothing left but uncertainty and loss.

The day I was diagnosed, the world around me blurred. Questions flooded my mind: What does this mean? What will happen to my wife? My kids? My life? Questions that don’t go away as ALS progresses but linger in the background even today, as I focus on the present and try to see my world through a different lens.

Despite the challenges, I’ve been fortunate to share in life’s most precious moments. I walked my daughter, my baby girl, down the aisle and into the arms of the man she chose to spend her life with. I remember thinking, I hope he’ll love her even a fraction as much as I do. I also stood beside my son as he vowed to love and protect his wife for the rest of their lives. I’ve watched both of my children step into new chapters of adulthood, and for that, I am incredibly grateful.

And now, I have the joy of watching another chapter unfold: I’m becoming a grandfather this year. My son and his wife are expecting their first child in April, and my daughter and her husband will welcome their baby in June. Even in the face of ALS, life continues to offer beautiful gifts.

ALS is unpredictable, and this journey is not mine alone. It belongs to my family too. My wife, my greatest love, is also my caregiver. Every day she shows a depth of strength, patience, and compassion that leaves me in awe. Our children lift both of us up, offering support in ways I never expected, but will always cherish deeply.

We haven’t faced this journey alone. The ALS Society of Alberta and the ALS Clinic have been essential lifelines. From loans of vital equipment to emotional support, their dedication has made an immeasurable difference in our lives. Alberta Health Services has also stepped in with kindness and care, sending therapists and specialists into our home, helping us adapt and navigate each new challenge.

Managing ALS is about more than just medical care, it takes a community. It’s the doctors who monitor every change, the friends who reach out just to remind me I’m not alone, and the small acts of kindness that carry me through my hardest days. Each person plays a role in building a network of support that sustains not just the body, but the spirit.

I spent my life working toward a well-earned retirement, one I pictured filled with rest and reflection. This might not be the retirement I imagined, but it is the one I have, and I meet it with gratitude. Gratitude for my wife, my family, my friends, and the community walking this path with us.

This year, I want you to walk for them. I want you to walk for everyone facing this disease. Please join us at Rundle Park on June 14, 2025, for Edmonton’s Walk Together for ALS, because none of us should have to face ALS alone.

Making It Possible 2025 - David MacLean, June 12

Living with ALS is challenging. As my mobility declines, constant adaptation becomes necessary. The loss of motor skills, while the mind remains clear, is mentally difficult—it’s a constant reminder of what’s changing and what’s being lost.

In the midst of these challenges, I’ve leaned into the things I love. For years, I had wanted to digitize my extensive LP, CD, and cassette collection. This past year, I finally took on the project. It’s brought me real satisfaction. As friends and family learned what I was doing, many reached out for copies of the music. To date, I’ve digitized over 19,000 tracks. I can listen for days without hearing the same song twice.

Cars have also been a lifelong passion. Over my lifetime, I’ve had 75 different vehicles. My last personal project—a 1952 BelAir—is now being enjoyed by my nephew and his family. Another, a 1951 BelAir, went to a friend who still shares his progress with me and includes me in decisions to keep me involved. A few years ago, I also helped a friend with the restoration of two 1970 Chevy C10s. One of those trucks is now featured on the LMC Trucks website, and I continue to consult on it.

Lately, my wife and I have taken on another meaningful project—cataloguing decades’ worth of family photos. We’ve looked through thousands of images, reaching back as far as the late 1800s. It’s been a beautiful reminder of the life we’ve shared and the memories we’ve made. These projects have helped keep my mind engaged. They’ve brought purpose and have helped me manage the emotional toll of ALS.

What’s made the biggest difference, though, is the unwavering support from family and friends. Not a week goes by without a phone call or visit, and often, there are several. People have travelled long distances just to spend time with us. Their presence and kindness are deeply meaningful.

Last June, I was truly humbled at the Drayton Valley Walk Together for ALS. So many supporters came—friends, family, former coworkers I hadn’t seen in over 30 years. Teams were formed, stories were shared, and the atmosphere was filled with care and connection. It was a powerful day of reunion and support for those living with ALS.

While there is a lot of public concern about healthcare, our personal experience has been overwhelmingly positive. The ALS Clinic, the ALS Society of Alberta, Home Care, Urgent Care, and Respiratory Services—each of them has shown compassion, dedication, and care.

It’s an honour to once again serve as the Drayton Valley Walk Together for ALS Ambassador. Being part of this event helps build a stronger, more supportive community for individuals and families facing ALS. It raises vital funds for equipment, services, and research here in Alberta.

ALS has changed my path—but not my spirit. And I’m grateful for every hand that’s helped me along the way.

Please, join me on June 14 at Lions West Valley Park, as we Walk Together for ALS.

Making It Possible 2025 - Monique Nadeau, June 11

My name is Monique, I was living in a three-floor walkup when my legs started to feel tired on the last flight of stairs. I attributed this to the fact that I was going to be 55 the following month and that my age was catching up with me.

I’ve spent my life as a caregiver: from babysitting in my youth to earning certificates and diplomas in dementia and companion care. Compassion, confidence, and competence have always been my true calling. I worked a lot of shifts through the summer of 2023 and I genuinely loved what I did. 

Then, on September 3, while taking my granddaughter out for her birthday, she noticed I was limping. My right leg was dragging a little. I told her that I was just tired. Around that same time,  I also started feeling heat and numbness in my right hand. I went to my doctor, thinking it might be menopause or arthritis. She ran bloodwork and scheduled me for a a mammogram, but that was it for now.  

By early October, things had gotten worse. My hand was weakening, and stairs were becoming a real issue. I had to quit my job. My doctor helped me apply for AISH and CPPD and prescribed a walker. I was referred to Dr. Nash at the EMG Clinic, thinking I had peripheral neuropathy. But  after the test, he said “You don’t have neuropathy.”

I asked him "What is wrong with me, then?” He said “I don’t know, but we will find out.”

That led to an MRI of my brain (which came back as unremarkable - a good thing!), followed by a spine MRI, and finally a spinal tap just a few days before Christmas. On Decem,ber 22, I cooked Christmas Eve dinner for my family.  I kept moving, I had to! The stairs were much harder, my right side much weaker, and I was exhausted all the time. I started packing, knowing that I needed to live somewhere with an elevator. 

By January I called AISH and CPPD every week, just waiting on answers. Then I got the call to come back to Dr. Nash’s office. 

On February 14, 2024, I was diagnosed with ALS. I cried.

Dr. Nash gave me a big hug and told me, "You’ll be OK for a while, but then it’ll get worse all at once. Call me  if I can help in any way." All I could think was “WTF!? NOW WHAT?!” I had plans! Registering for social work, going back to Quebec, camping, watching my grnadkids grow up.  I had a choice to make. Give in, and let this damn disease consume me, or fight against it with all I have. I chose to fight. 

I got connected to the ALS Clinic and was enrolled in four research studies. I met a whole team of professionals, and I started to feel less alone. I’m adapting to my new world. I was also introduced to the ALS Society of Alberta, apart from the good people who work there,  they helped me with my physical needs: a better walker, access to equipment, and finally, an apartment with an elevator! After six months, AISH finally approved me. I guess dying moves you up the list. The ALS Society of Alberta also hosts online support groups, where I could connect with others on different paths but similar journeys.

By April 2024, I had a BiPAP machine (I hated it). I kept pushing myself to keep cooking, cleaning, and caring for myself, but every task took more out of me. I’d fall, learn, adapt, and keep going. By December, both legs and my left foot were affected. I could still walk, but just barely. At home, I used a walker, and outside I used a wheelchair.

By early 2025, things declined fast. More falls. Less independence. I could no longer cook, barely clean, and personal care was becoming more difficult. I finally signed up for home care. I started using an electric bed, a shower bench, a raised toilet seat, and an electric wheelchair. It was time to let go of the stubbornness and accept help without giving up my sense of autonomy.

Dr. Nash was right. I was okay for a long while, and then…everything started changing quickly.  I’ve lost my legs.  My queen-sized bed. My fierce independence. But I haven’t lost my spirit.

In September, I visited Quebec while I could still walk. My next goals? An accessible hotel in Victoria. A quick trip to Jasper. Another summer of camping. I’ve also connected with ICAN for support adapting to my new way of living.

My ALS journey continues. I’m now 15 months post-diagnosis and nearly two years since symptoms began. I hope I make it to 2028. I’ll be 60. Perseverance is my middle name. I’ll keep going until I can’t go no more. I still have things to do. And I’m not done living yet.

Making It Possible 2025 - Quonset Days, June 10

What began as a heartfelt tribute in 2010 has grown into a movement of music, memories, and monumental impact. Quonset Days, or for those who know it best, “The Greatest Outdoor Party on Dirt” returns to Seven Persons, Alberta this July 17–20, 2025, bringing together a community like no other to support Albertans living with ALS.

Now in its 16th year, Quonset Days is more than a country music festival, it’s a powerful tradition rooted in love, resilience, and hope. The Biemans family (Janet, Trevor, and Traci) created this unforgettable event to honour their beloved husband and father, Peter Biemans, who lived with ALS and whose courageous ALS journey continues to inspire thousands.

Quonset Days started as a backyard gathering and has grown into one of Alberta’s largest grassroots ALS fundraisers, raising more than $860,000 to date for the ALS Society of Alberta. But its true value lies beyond the numbers. It’s in the stories shared, the memories made, the community built, and the legacy that continues to grow, year after year.

We are endlessly grateful to the Biemans Family, the Quonset Days Board of Directors, the dedicated volunteers, sponsors, and every attendee and performer who brings this event to life. Your hard work, heart, and hometown spirit are what make this weekend unforgettable, and your support helps the ALS Society of Alberta fund provincial ALS research, and provide essential care, equipment advocacy, and hope to clients all across the province.

To the Biemans family: thank you for turning your grief into generosity. Your unwavering dedication is a tribute to Peter’s memory and a gift to every Albertan impacted by ALS. You are creating a future of compassion, connection, and possibility.

And yes, the 2025 music lineup is once again nothing short of spectacular. It all starts with a secret wild performance on Thursday, July 17 (2024 brought Jess Moskaluke, and 2023 featured George Canyon)! From high-energy anthems to late-night showstoppers, here’s what you can expect:

Thursday, July 17 

🎤 Secret Wild Performance

Friday, July 18:
🎤 Phoenix – 6:00pm
🎤 Jess Moskaluke – 8:00pm
🏁 Tractor Races – 9:00pm
🎤 MacKenzie Porter – 10:30pm
🎸 Morgan Klaiber – 12:30am

Saturday, July 19:
🎸 Pass the Guitar – 4:30pm
🎤 Matt Lang – 6:15pm
🎤 Owen Riegling – 7:45pm
🎉 Live Auction – 8:45pm
🎤 Default – 10:15pm
🎸 Vanity Trip – 12:00am

With past headliners like George Canyon, Brett Kissel, and Steven Lee Olsen, Quonset Days has built a legacy of unforgettable performances, and 2025 is no exception. Don’t miss your chance to be part of the magic! Tickets are selling fast, and RV Camping Passes are already gone! Grab yours now and learn more at www.quonsetdays.com or use the link in our bio.

Quonset Days is how Making it Possible comes to life, for Albertans navigating ALS, through a weekend filled with strength, love, and community, and by honouring Peter’s memory every step of the way. 💙

Making It Possible 2025 - JoAnn Noffsigner, June 9

“ALS has changed my life. But, with my community, my girls, and my Pixie Dust, I’m still living with joy, stubbornness, and heart.”

My journey with ALS began when I started to feel weakness in my hands. I didn’t think much of it at first, and ALS certainly didn’t even cross my mind. I’d had major life-altering injuries before and figured I just needed more physio. I started going to physio weekly, but it didn’t help. It was my dear friend Shawna, a nurse, who first suspected it might be something more serious. 

After a string of appointments and referrals, I received my diagnosis at the Kaye Clinic in Edmonton in January 2025.

I’ll be honest, the news hit me hard. I broke down. But I’ve always been a tough one, and I quickly told myself that crying about it wasn’t going to change anything. I had to stay focused and determined to figure out how to live with this. 

My hand and arm strength declined quickly. I’ve had to relearn how to do a lot of everyday things. Eating, for example, I now just pick up food with my mouth and eat it that way. It might not look typical, but it works for me. I’m not wasting away, and that’s what matters!

I’ve been surrounded by love and support every step of the way. My closest friends, my “outside girls” are incredible. Colleen does my grocery shopping and laundry, and her husband Jim helped set up my space just how I like it. Deila is my power of attorney, and Shawna continues to help manage my medical care. My girls have always been there for me. 

I also have homecare four times a day to help with meals and bedtime. They even brush my hair every time I see them. That’s four times a day, and I absolutely love it! I’m so grateful and blessed to live in a community where I’m supported not just by friends and caregivers, but also by my occupational therapist and the ALS Society of Alberta, who check in regularly and ensure I have everything I need. 

Before ALS, my life was filled with little paws and wagging tails. I bred Brussels Griffon dogs for 25 years, and they were my world. I showed them professionally and even worked in the grooming shop at Mills Haven Vet Clinic in Sherwood Park. When arthritis made grooming too difficult, I became the Head Instructor at the Alberta School of Dog Grooming for 10 years. My friends used to house-sit my dogs when I was away. Now, they take me to dog shows and make it possible for me to remain connected to the community I love.

One very special pup has stayed by my side though everything. Pixie “Dust,” was born premature with a cleft nose and couldn’t nurse, so I bottle-fed her every hour for five weeks. She survived. She’s my miracle. I don’t care if her nose is upside down, I love her exactly as she is. Pixie brings so much joy, not just to me, but to everyone who visits. People come to see her, pet her, and share in her energy. Since I can’t pet her myself anymore, it means even more to have her close. She’s a tiny half-Griff, only four pounds. She’s my constant companion and sleeps beside me in a handmade crib.

After 22 years of rural living in my mobile home, I made the move to GEF senior housing. Within three months, I found the perfect place, and they welcomed Pixie Dust with open arms. The staff are amazing and treat me so well, and everyone adores my little dog. We’ve truly found our place, and I’m thankful every day.

ALS has brought big changes, yes. But with my community, my girls, and my Pixie Dust, I am still living life with joy, stubbornness, and heart.

Making It Possible 2025 - Laurie Ferguson, June 8

Almost two years ago, I received a life-changing diagnosis—ALS. The journey since has been a rollercoaster of challenges, unexpected moments, and incredible support. Looking back, the signs were there. In February 2023, stepping onto a curb became difficult—something I dismissed at first. By spring, frequent falls raised concerns, and in May, I voiced them to my doctor. He reassured me it was aging, but I knew there was more.

Frustration led me to the E.R. in October, determined to be heard. A fourth-year resident took my concerns seriously, noting my family history—my mother’s ALS diagnosis in 2001. That moment changed everything. A referral to Neurology set things in motion. Just one month later, my sister and I sat across from Dr. Jewett as he confirmed what I had suspected: Familial ALS. From that moment, the ALS Clinic at South Health Campus became my lifeline.

Thanks to research advancements, and support from the ALS Society of Alberta, I have access to resources my mother never had—a comforting thought. Through it all, my friends and family are my greatest strength. What could have been a dark time is a reminder to embrace life. Inspired, I checked off a bucket-list adventure: an Alaskan cruise!

ALS has changed my path but not my spirit. With my community and the ALS Society of Alberta behind me, I move forward with gratitude. I’m honoured to be the 2025 Betty’s Run for ALS Ambassador and invite you to join me on June 8. Whether you walk, run, donate, or cheer, your support makes a difference. Let’s stand together for those living with ALS today and for a future without this disease.

Making It Possible 2025 - Doug Lee June 7

I am honoured to be chosen as the 2025 Ambassador for the Cold Lake Walk Together for ALS on June 7.

My journey with ALS started around June 2023. I noticed that I was having a hard time gripping things like my coffee mug with my left hand. My arm felt weaker when I was working on things around the house and garage. I initially thought it was the start of arthritis. My family doctor referred me to a Neurologist who was concerned about my symptoms, which included weakness, muscle loss, and muscle twitching. The Neurologist sent me for nerve testing (EMG) on Dec 5, 2023. It was at this EMG appointment that the doctor told my wife and me the devastating news; the diagnosis appeared to be ALS. It was a complete shock. We were stunned.

“What next? What does this mean?” I had no idea what my future would hold, but I knew it wasn’t good. It broke our hearts to tell our two daughters that I have ALS. Would our three grandchildren be able to even understand? I began breaking the difficult news to other family members.

The love and support I immediately got from my family and close friends was heartwarming. The strength our daughters have shown over these past two years is a blessing. My wife has been my sole caretaker and my rock. They are with me every step of the way. They are actively involved in my treatment plan and have attended each appointment at the Kaye Clinic and the ALS Clinic. They have found ways to support me as I adapt to changes and challenges.

I have always been a hands-on guy. Working jobs that require being outdoors no matter the weather, using tools, maintaining vehicles, repairing small engines, and managing my own small business. I love to spend time with my grandkids, camping and walking outside. Now, with the progression of my ALS, I am unable to use my left arm/hand. The strength in my right arm, legs and torso has also begun to rapidly decline. The changes and challenges have limited my ability to do the things I enjoy, but I try to remain positive every day.

Along with my ALS, I also live with Vascular Dementia. This is another obstacle for me and my family, as this disease is progressing as well.

The support I receive from the Kaye Clinic, ALS Clinic, and ALS Society of Alberta is always compassionate and caring. The ALS Society of Alberta has been a great resource for me and my family through phone call check-ins, access to support groups, and especially their Equipment Loan Program. The equipment needed to function with ALS can be expensive and daunting to obtain, so we are beyond grateful for the help of the ALS Society of Alberta.

I have made walking a priority over the last several years of my life. I enjoy the peaceful time spent while making miles outside, no matter the season or weather. I will continue to walk for as long as my body allows me to, even though I have slowed down and am unable to go as far.

Join us on June 7th at Lakeland Lutheran Church, Cold Lake, as I walk with my family, friends, and loved ones in support of those living with ALS. Let’s make a difference, together.

Making It Possible 2025 - Dave McMaster June 6

Now in my third year living with ALS , I can honestly say it hasn’t been as bad as I anticipated. Yes, there have been many new challenges, both physical and emotional, but this journey has also given me pause to appreciate the day-to-day activities that I continue to do. 

Initially, the biggest challenge with this diagnosis was the weight of the unknown. Being told you have a terminal disease, with no cure, is devastating, and not knowing how quickly your body will change or hold up only adds to that weight.

For me, the mental side of the diagnosis has been the most difficult to carry. It weaves itself into my day-to-day psyche in ways that are hard to explain. But the upside is, that over time, and with an array of support sources, those challenges are much easier to handle and the weight becomes more manageable.

 

One of the unexpected challenges has been witnessing how fast my social circles atrophy after being tagged with such a finite prognosis. It’s something no one warns you about. Don’t get me wrong, I get it! People don’t always know what to say or how to respond to my physical changes. The questions can feel heavy. What do you say? Are you in pain? What do you do all day now? How much worse will your condition get? 

But here’s the thing, staying connected matters! Social connection is an essential 

part of dealing with day-to-day hurdles - whether it’s reminiscing with friends about old times, catching up with family activities, or pontificating (with complete optimism) on how the Flames are gonna win the Cup next year. I make a conscious effort to stay in touch with the people who’ve been a part of my life because these connections are crucial and help me face each day with more strength.

I cringe to think what my life would be without the immense amount of support offered by family, friends, the ALS Society of Alberta, and the ALS medical community. I truly don’t know where I’d be without their unwavering support. Their love, concern, and expertise have carried me through more than they know, and I’m endlessly grateful.

As I look ahead, I’m feeling hopeful for all that is possible. Year four's highly anticipated activities include gearing up Betty’s Run for ALS, anticipating a long awaited visit from our family in London, and hitting bike trails on new e-wheels with my lovely wife. Who knows, may even have time to attack that Flames thing!

Making It Possible 2025 - Saz's Soldiers June 5

What began as a personal journey for the Sasyniuk Family has grown into a powerful movement of community, compassion, and hope. 

Saz’s Soldiers is more than an event name, it’s a testament to the strength, unity, and unwavering determination of a family and their supporters to make a difference in the fight against ALS.

Inspired by their own ALS journey, the Sasyniuks have rallied together year after year, organizing golf tournaments, raising awareness, and bringing people together for a cause that hits close to home. Their signature event, the Saz’s Soldiers ALS Golf Tournament, is held annually at the Coloniale Golf Club in Beaumont. What started as a small gathering has blossomed into a beloved tradition that brings joy, laughter, and generosity to the greens every June.

Since 2008, this dedicated group has impressively raised over $170,000 funding essential programs and services that bring hope and support to Albertans living with ALS. The tournament has become a cornerstone of the community’s support for the ALS Society of Alberta. 

Led by Tanya Sasyniuk, in honour of her husband Derek, who lives with ALS, this growing team behind Saz’s Soldiers embodies the very spirit of what "Making it Possible” means. Their impact doesn't stop at the golf course, they’ve also laced up in the past for the Edmonton Walk Together for ALS, raising awareness and funds with every step.

This year’s golf tournament takes place on Saturday, June 7, and promises a full day of fun and connection: from a hot buffet breakfast to a steak dinner and incredible prizes. But the mission behind it is always front and center: to support individuals and families living with ALS and to help fund critical care and research.

With every swing of the club and every step taken, Saz’s Soldiers shows us what’s possible when a community stands behind a cause. Their efforts are rooted in love, resilience, and the belief that even in the face of ALS, there is still so much that can be done, together. Their journey is a powerful reminder that while we can’t always control what life brings, we can choose how we respond: with strength, with heart, and with purpose.

Making It Possible 2025 - Judy Webb, June 4

“I promised he’d stay at home until the end, and thanks to the ALS Society of Alberta, I kept that promise.”

My darling husband David was the love of my life for 38 years when he was diagnosed with ALS in October 2023. He had just turned 74 the week we received the devastating news and terrible shock. Looking back on 2023, there were subtle signs, as early as January. He noticed his right leg felt weaker, he was having trouble picking up small items with his left hand, and I noticed his foot dragging and making a “flop” sound. He was also losing weight. We chalked this all up to aging. But when he choked on a piece of raw cauliflower & needed the Heimlich maneuver , we knew something more serious was happening.

David was a retired family physician, and after a normal gastroscopy ruled out esophageal cancer, he sat down at the computer and after a short while said "I think I have ALS!” Within days, we saw our GP. A week later, after nerve conduction studies, our fears were confirmed. 

The shock was unbelievably overwhelming. We had a family conference with our two grown children and their spouses and discussed our next steps. Our large home - beautiful but now inaccessible place on three acres -  was certainly not going to work for what lay ahead. I told David I would do everything I could to care for him, and that meant moving closer to support.

Thankfully, our daughter, a health care aide, and her husband lived close by on a 25-acre horse farm. We made the decision to sell our home and build a modular home on their land. I spent the winter months sorting, packing, and downsizing. We sold our home quickly and moved into our new space that June. It was built to be fully accessible and prioritized David’s comfort.  

I promised he’d stay at home until the end, and thanks to the ALS Society of Alberta, I kept that promise.

With their amazing support and our incredible occupational therapist, we were equipped with everything he needed: a hospital bed beside mine, a porch lift for the front steps, walkers, a wheelchair, bath bench, a transfer device, and so many other supports that allowed David to stay mobile and comfortable.  He loved getting out, going to church, the mall, or around the farm side-by-side. He especially loved holding the cats and watching the horses. 

His biggest challenge was breathing. He couldn’t lay flat and relied on a BiPAP machine to sleep, and eventually during the day as well. Swallowing became very difficult. He declined a feeding tube, so I adapted every meal. I became an expert at mashing foods and adding lots of sauce and gravy to help him eat. I used thickener for liquids, and I performed physio on his back to help prevent choking, even on saliva. 

He continued to lose weight, and by mid-November, he was too weak to leave the house. By February, he needed the BiPAP (non-invasive ventilator) around the clock. On February 14, Valentine’s Day, my sweet, darling husband passed away peacefully at home. He never once complained during his illness, a true testimony to his strength, gentle spirit, and unshakeable faith.

My heart sinks when I learn of others just starting this difficult journey, it's such a horrible disease. I sometimes think I would take him back even at his weakest, just to have him here - but that's selfish as I know how much he suffered. We made the most of every day we had together. I will always be grateful for the support that helped keep the promise that we would be together, at home, until the very end.

David will always be in my thoughts, and I’ll carry him in my heart forever.

Making It Possible 2025 - Dan Pubben, June 3

My name is Dan, and I’m 42 years old. I’ve been married to my best friend and soulmate, Kate, for 11 years, and together for 13.5. We’ve built a life full of love and laughter with our two amazing kids: Gwen, 9, and Oscar, 4. They are sweet, kind, and the reason I fight every day.

Back in August 2023, I noticed twitching in my arm. I chalked it up to the at-home workouts I’d been doing. But as weeks passed, despite massage, physio, chiropractic treatments, even CT scans and x-rays, the twitching never stopped. On October 16, I had an EMG. Two days later, the neurologist told me something I’ll never forget: “very concerning” results. 

On October 18, 2023, I was diagnosed with ALS.

Writing those words still doesn’t feel real. The diagnosis hit like a lifequake. I’ve had moments of deep fear and found myself asking, How the hell am I supposed to handle this? I’ve cried. I’ve questioned everything. But more than anything, I’ve found strength I didn’t know I had. I refuse to let ALS define or consume me. 

I’m living this life, like a boss, one day at a time. And I’m not doing it alone. Kate and I are in this together. We’ve cried until we couldn’t breathe and laughed until we cried. We lean on each other because, honestly, we have no other choice. At the end of every day, it always comes back to “just us.” I couldn’t be more grateful that the universe brought her into my life.

Our kids don’t yet understand the gravity of my diagnosis, and I try not to let on that anything is wrong. Their happiness keeps me grounded. When I look into their eyes, I know exactly why I keep showing up every day. They deserve the best of me, for as long as I’m here.

Since my diagnosis, I’ve lost some things that once defined me, like my soccer career. After nearly 40 years of playing, I could no longer stop myself from falling during games. So I hung up my cleats with a smile, scoring two goals in my final match and surrounded by teammates I love like brothers. I also had to step away from my job installing window coverings. My hands just couldn’t hold tools anymore. It wasn’t the retirement we planned for, but there are bright sides: more time with the kids in the morning and more time with Kate, whose workshop is based at home. Being close to her is one of my favorite things.

But ALS just keeps on taking. My grip strength is nearly gone in my left hand, and now it’s starting to go in my right. Speech is slowing, and my legs are growing weaker. I’ve had to say goodbye to things I once took for granted like running after the kids, jumping on the trampoline, tying my shoes, cutting my food. Each of these losses is a harsh reminder of how fleeting life really is.

Still, I fight. I smile. I adapt. I live.

In February, I got a cornflower tattoo, the flower of hope for ALS. Despite its delicate appearance, the cornflower is a tough, resilient plant. It thrives in harsh conditions. That’s what I aim to do too. It’s not easy showing courage every day, but having that symbol on me reminds me to push forward. To persist. To overcome.

In April, with the help of an incredible community, I hosted my first fundraiser: Dan’s Night to Fight – Like a Boss. We raised approximately $40,000 for the ALS Society of Alberta. I was blown away by the generosity of friends, local businesses, and supporters from all over. Standing at the center of something so powerful and positive was deeply humbling. I’m proud of what we accomplished. And yes, I’m already planning for next year’s event.

Truthfully, it’s been hard since the fundraiser ended. It gave me such a purpose for months, and I’ve been feeling that absence. The physical decline has accelerated. Mentally, it’s been one of the toughest stretches yet. But I’m still here. Still breathing. Still smiling. And that means it’s still a good day to have a great day.

There’s a quote from Lou Gehrig that I come back to often: “Today, I consider myself the luckiest man on the face of the Earth.”

Even now, with ALS, I get it. Because I have love. I have laughter. I have purpose. I have today. And I’m choosing to live it, like a boss. There's no point in rolling over and dying when there's living to do!

Making It Possible 2025 - June 2

I’ve been on a roller coaster ride of emotions over the last year since my wife passed. We were together for almost 45 years, and we were best friends. Together, we raised two sons, travelled extensively, moved a dozen times for work, made friends across countries, and volunteered wherever we lived. In short, we shared a rich, meaningful life together.

Three years ago my wife was diagnosed with ALS.

At first, the signs were subtle, but unmistakably concerning. Very soon after the ALS diagnosis we began planning home renovations and secured equipment to support her mobility. Just six months after the renovations were complete, her condition worsened significantly and I found myself in unfamiliar territory as her primary caregiver. 

We worked together, constantly adapting, sometimes week by week to ensure she had the support she needed. As caregivers know, this is a demanding role that doesn’t stop. I felt honoured to support her and proud of the way we continued to face things as a team.

The last 15 months have been especially difficult. But the memories of her and I continue to guide me as I adjust and learn to live without her.

One source of comfort and support has been “Staying In Touch” group hosted by the ALS Society of Alberta. It’s a virtual discussion group for bereaved caregivers held on the last Thursday of each month. Through it, the ALS Society of Alberta makes it possible for people all across Alberta to find peer support and connect with others who understand what it means to lose someone they love to ALS.

I wasn’t ready to join a discussion group right away. For many months, my grief was too raw. Still, I found myself wondering whether something like that might help. I started researching and everything I read said that talking to others can be an important part of the healing process. My family was loving and supportive, but I wasn't ready to talk openly about my loss. I focused on practical things like yard work, car, or the house - anything to keep busy. Looking back, I think I was internally processing my grief in my own quiet way.

One day last autumn, I remembered the Staying In Touch  group and thought maybe it was time to join a session and give it a try. I wasn’t sure what to expect or how I would react to it. Would I have the emotional strength to share my thoughts and experience? Would hearring others’ stories be overwhelming? Would the two hours feel like too much?

I quickly learned the value of Staying In Touch.

Each attendee (virtual or not) has been through the challenging experience of caring for a family member who has lived with ALS. 

This shared common ground makes the group feel safe and allows participants to readily relate to the discussions. The tone is always respectful, encouraging, respectful, and supportive. There are sad moments and sometimes there is even lighthearted humour. There is no formal agenda but there are a few simple ground rules to help people feel at ease: speak only if you want to, and what is shared and discussed in the meeting, stays in the meeting.

Since I joined, I’ve become more comfortable sharing my story. I still need to pause when emotions rise, but the group is always patient. I have found the people at these meetings are particularly good listeners. Talking with others in these meetings has been an important opportunity to help process my loss. It’s even helped open up and talk to neighbours and acquaintances - something I was reluctant to do last year. Perhaps talking to others so much more has helped shift my perspective. 

As Dr. Seuss said “Don't cry because it's over, smile because it happened”.

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Making It Possible 2025 - Kevin Truss, June 1

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Looking back, I realize my symptoms began a couple years before my diagnosis. I had set a goal to get fitter by running, following a structured training program. But no matter how hard I tried, I just wasn’t improving. Then, in the fall of 2023, new symptoms began to appear. My voice was getting hoarse, swallowing became difficult and I would sometimes have trouble catching my breath.

After almost a year of tests - blood, breathing, and just about every gastrointestinal test imaginable, losing 45 pounds and being constantly fatigued, I was finally referred to a neurologist. In October 2024, my wife Kate and I sat through the standard physical assessments.

The neurologist told us it “was probably ALS” but this was pending more tests to rule out other possibilities. We were completely shocked and devastated. I remember sitting together on a bench behind Rockyview Hospital crying and holding each other in disbelief.

While we waited for confirmation, my breathing got worse and I noticed a drop in my blood oxygen levels. We went to the ER on November 4, 2024. The very next day, I underwent an EMG (nerve test).

The diagnosis: Bulbar Onset ALS. I was 53 years old.

Cue another bout of shock and devastation. And then came the incredible hard task of telling our teenagers, Emma, 17 and Daniel, 15.

The first couple of months were a whirlwind of appointments, decisions, and emotion. I was prescribed a BiPAP to support my breathing at night, and a feeding tube was scheduled for early December. It was in mid November that we went to our first ALS clinic appointment and were introduced to the ALS Society of Alberta. A support group meeting was coming up, but I didn’t feel up to going, so Kate went without me. When she came back, she told me “You really should go next time. These are people who get it.” So I went. And although it was tough, I’m glad I did.

Whether online or in person, the tone of the meetings is very positive, “Living with ALS, not dying from it.” They brighten and lift my mood for days afterward. We always learn something too, like medication tips, home reno advice, travel hacks, and more.

The ALS Society of Alberta has also been invaluable when it comes to equipment. Through their Equipment Loan Program, we’ve received everything we’ve needed - gear that would otherwise be a huge financial burden.

If I could offer any advice to someone newly diagnosed, it would be to go to the support group meetings. Also accept any assistive technologies you are offered, including BiPAP and a feeding tube, if they’re recommended. And most importantly, be grateful and lean into the love of your caregiver. Their support will carry you more than you can imagine.

These days, I’m on BiPAP for about 22 hours per day after a bout with RSV earlier this year. It doesn’t bother me much, because I can’t talk anymore and I eat through a feeding tube, so wearing the mask isn’t much of an inconvenience. I’ve managed to put some weight back on thanks to the tube, but I continue to lose strength and dexterity in my hands.

But with all that, we still find ways to experience joy. We recently returned from a trip to Maui. I couldn’t snorkel like I used to love doing, but I found happiness in the little things like watching lizards scurry about on the lanai, feeling warm sand beneath my feet, sitting under the umbrella on the beach, and even managing a few quick dips in the ocean!

We’ve also learned to be grateful for what we have in our lives, and to hold on tight to the moments that matter: watching and cheering Daniel on at hockey, celebrating with Emma as she graduates high school, and just being together as a family. We’re also incredibly grateful for the generosity of the community around us. To the friends and family who contributed to our GoFundMe for our home renovations, to the ALS Society of Alberta, and to Mikael Backlund for hosting us at a Flames game (where we met him and I received a signed jersey), thank you for Making It Possible!

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Making It Possible 2025 Introduction

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What is Making It Possible?

Making It Possible is a celebration of courage, compassion, and community. It is a storytelling campaign that celebrates the strength, spirit, and everyday lives of Albertans living with ALS.  It’s also about recognizing the remarkable caregivers and other Albertans who make life better for those living with ALS, and the powerful ways that people show up for one another, even in the face of an unforgiving disease.

Too often, ALS is defined by what it takes away. Making It Possible shifts the focus to what is possible: connection, purpose, laughter, love, and dignity. 

Through personal stories and shared experiences, this campaign honours those who continue to live fully, as they adapt to life with ALS.

It’s not about dying from ALS, it’s about living with it. Living creatively. Living courageously. Living with support.

Each story highlights how people are making the most of each day: caregivers going the extra mile, community members stepping in with compassion, and individuals with ALS showing resilience in ways big and small. It’s also a tribute to the services, equipment, and relationships that make these moments possible.

Every day, Albertans living with ALS and their loved ones navigate extraordinary challenges. But they don’t do it alone.

At its heart, Making It Possible is a reminder: life with ALS can still hold joy, meaning, and connection. And with the right support, Albertans don’t just cope, they live. 

This campaign highlights their stories. Stories of resilience. Stories of love. Stories of impact.

Together, we raise awareness, build connection, and honour Alberta’s ALS community.

Announcing the Recipients of the Achievements for Ann - Backlund Fellowship

The ALS Society of Alberta, in partnership with Alberta Neuroscience, are proud to announce the first-ever recipients of the Achievements for Ann - Backlund Fellowship: Dr. Evandro Jose Beraldi and Dr. Parastoo Razmara. These groundbreaking ALS researchers are at the forefront of urgent, Alberta-based studies that could change the lives of those battling this devastating disease.

This Fellowship holds special significance as it was established by Frida Backlund, wife of Calgary Flames’ captain Mikael Backlund, in loving memory of her mother, Ann Engstrom. Ann’s strength and hope inspired Frida and Mikael to create this initiative, which reflects their commitment to supporting meaningful advancements in ALS research.

“This announcement is deeply meaningful to me and my family,” said Frida Backlund. “The Achievements for Ann - Backlund Fellowship was created to honour my mom, and supports groundbreaking research here in Alberta that reflects her strength and hope for a future free from this disease. We are proud to support these two exceptional researchers as they work toward advancements that could transform the lives of those affected by ALS."

With $140,000 awarded to each researcher over the span of two years, both research projects show significant promise in helping to better understand the cause, and a potential cure, for ALS.

Dr. Beraldi is studying how bacteria in the gut might affect ALS, and how it differs between males and females. His research focuses on whether certain gut bacteria could help protect nerve cells, which might lead to new treatments for ALS. Based at the University of Calgary’s Cumming School of Medicine, Dr. Beraldi has great mentors and resources supporting his work.

Dr. Razmara is using zebrafish to test existing FDA-approved drugs to see if they can help fix protein problems that cause nerve and muscle issues in ALS. Working with a talented team at the University of Alberta, her research could speed up the process of finding new treatments for the disease.

The ALS Society of Alberta, in partnership with Alberta Neuroscience, are committed to keeping the public informed about the progress of these groundbreaking studies over the next two years. Updates will be shared regularly, highlighting key milestones and discoveries as researchers work toward improving the lives of those affected by ALS.

Introducing the Debi Lefaivre ALS Youth Champions Fund

The ALS Society of Alberta is honoured to introduce the Debi Lefaivre ALS Youth Champions Fund—a heartfelt program that carries forward the remarkable legacy of Debi Lefaivre. Formerly known as the Support for Champions Program, the Debi Lefaivre ALS Youth Champions Fund provides funding to children in Alberta who have had a parent or guardian affected by ALS - specifically for programs and activities that they may not otherwise be able to afford due to the financial strain of an ALS diagnosis.

Applications are now open. Click here to learn more or apply.

Remembering Tara Mackay Pentney

With very heavy hearts, we celebrate the life of Tara Mackay Pentney, a dedicated member and Board Chair of the ALS Society of Alberta's Board of Directors for over two decades. Tara was an amazing mother and grandmother who devoted much of her life to volunteering and spreading kindness. Her unwavering commitment and compassionate spirit profoundly impacted our organization and community.

Board Chair, Nancy Lyzaniwski shared, “Tara's dedication, leadership, and mentorship were unparalleled. Her fierce advocacy and tireless efforts to improve the lives of those affected by ALS have left an indelible mark on our organization. We are profoundly grateful for her years of service and her enduring legacy of compassion and commitment."

Tara was a beacon of strength and compassion at the ALS Society. Her unwavering dedication to supporting families and tireless efforts in building the foundation of our Society have made an everlasting impact. Her legacy of kindness and advocacy continues to inspire us all. She had a steadfast vision to raise awareness about ALS, in loving memory of her mother-in-law. Tara's legacy of generosity and service will continue to inspire us, and she will be so deeply missed. We are so grateful for all of the time we spent with her.

#MakingItPossible Wrap-Up & Thank You - June 30, 2024

As ALS Awareness Month ends, so too does the 2024 Making it Possible campaign series, and we want to express our heartfelt gratitude to all participants for sharing their personal ALS experiences with  our community. 

We are filled with gratitude and extend our sincere appreciation to all those who took part in ALS Awareness Month - event participants, Ambassadors, volunteers, committee members, donors, and sponsors. Your support has propelled our fundraising during ALS Awareness Month to new levels - truly a remarkable success.

Your ongoing commitment ensures that individuals in Alberta living with ALS can count on the ALS Society of Alberta's support, while also advancing crucial research toward finding effective treatments and a cure. With three walks closing off the season in September, we're eager to announce final amounts raised. 

Making it Possible began as a way for clients and their loved ones to share their personal experiences with ALS. Year after year, we are profoundly moved by the resilience and optimism demonstrated by our community. 

You are examples of life's possibilities, even in the face of ALS—embracing joy, navigating sorrow, nurturing hope, and cherishing the love of those closest to us. Each day, our community shares invaluable lessons on living fully - reaffirming our dedication to realizing our mission: to make each day the best it can be for those living with and impacted by ALS.