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

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”.

Making It Possible 2025 - Kevin Truss, June 1

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!

Making It Possible 2025 Introduction

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.

#MakingItPossible Cathy Martin - June 29, 2024

Cathy Martin's journey with the ALS Society of Alberta began in 2003, marking the start of a remarkable two-decade commitment that profoundly impacted the Society and the lives of those affected by ALS. From 2005 to 2008, she served as the Edmonton Walk Together for ALS Coordinator, where her passion and organizational skills brought the community together to raise awareness and essential funds for ALS research and support. Her contributions to the Board were multifaceted, serving as Chair and taking on key roles in the Advocacy, Governance, Finance, and HR committees, ensuring that every aspect of the Society’s operations was strengthened and aligned with its mission.

 One of Cathy’s most significant achievements was she worked together with other board members to create the Society’s first Strategic Plan in 2008.  This blueprint laid the foundation for the Society’s growth and direction, guiding it through transformative changes. Under her guidance, the ALS Society of Alberta became a strong financial organization, built robust community partnerships, and developed a vision that ensured services and programs were tailored to best meet the needs of those living with ALS. Cathy's leadership was instrumental in developing a strong and diverse Board of Directors, fostering an environment where different perspectives could thrive, and innovative ideas could flourish.

 Cathy's impact extends beyond her strategic and organizational skills. Her unwavering commitment to those affected by ALS is evident in every initiative she undertakes. She lives her vision, demonstrating it through her compassionate leadership and tireless advocacy. Her ability to inspire and mobilize others has created a legacy of hope and support within the ALS community. Cathy's story is a testament to what visionary leadership and heartfelt dedication can achieve, illustrating that with passion, vision, and commitment, it is possible to create lasting positive change.

 As Nancy Lyzaniwski, Board Chair of the ALS Society of Alberta, beautifully expressed: "We are truly grateful for Cathy's dedication to the Society for which the ALS community across Canada has benefited. She has contributed so much including her governance and organizational expertise in Alberta and to pan-Canadian collaboration. Her focus has always been on ensuring the seamless provision of services and supports to those living with and affected by ALS while raising funds to research treatments and ultimately a cure."

Reflecting on her experience, Cathy shared: "Being a member of the Board of the ALS Society of Alberta has been one of the most rewarding experiences of my life. This Board is a model for leadership, dedication, and the very best standards of governance and stewardship of resources, and it has been a true honour to be connected with such amazing people. I have certainly received far more than I have contributed throughout my time on the Board. I have received the gift of knowing for sure that when skilled, caring people come together to make a difference, the impact ripples far beyond its immediate circle.”

#MakingItPossible Patricia Latremouille - June 28, 2024

Patricia has been a part of the community who attends the ALS Society Support groups since 2013. Initially, she attended the PLS group as this was her initial diagnosis, and then, in 2014 when she was diagnosed with ALS, she began attending the ALS groups.

Patricia is drawn to the sense of community and belonging that she feels when she attends the groups. Though others may not be on the exact same journey living with ALS, it means so much to her to speak openly and honestly about what she experiences living with ALS, and to know that others understand. It is also very meaningful for Patricia to be able to reciprocate and offer support to others.

Patricia says that she is grateful to have a supportive space to speak candidly about living with ALS. She doesn’t always want to be this candid with those closest to her as she is sometimes concerned that what she shares might worry them. In this sense, the group offers an outlet for the difficult aspects of the journey living with ALS.

At the same time, the ALS Support group is where Patricia also shares smiles, laughs, and updates everyone on her latest adventures that bring her joy!

Not only is the group a source of community, genuine support, and belonging for Patricia, but it’s a source of information. She says she has found the nuggets of information that other group members share to be invaluable. She also appreciates hearing the occasional guest speaker.

Patricia’s favorite…the in-person groups! Not only is it a chance to meet those she chats with in zoom groups in person, but it’s one of her favorite outings. We think it might be the cookies too 😊

For someone living with ALS, who has never attended a group, Patricia would encourage them to give it a try and has this to say…

‘There are always others willing to help at the ALS Support Group.’

#MakingItPossible Dennis Rommel - June 27, 2024

My name is Dennis Rommel. I remain humbled and honoured to have been the Edmonton Walk Ambassador for the 2022 Walk Together for ALS event.

I was diagnosed with ALS in December 2020 but was experiencing symptoms for about four years prior. I was on long-term disability since 2017 before retiring in the fall of 2019.

After a fall at home, I spent 3 weeks in hospital in November 2020 and underwent many tests. I was originally told I have PLS (Primary Lateral Sclerosis). I had my first appointment at the ALS Clinic on December 1, 2020, where my diagnosis was changed to ALS. This came as a huge shock. December 1 is also my wedding anniversary; Lorna and I “celebrated” 41 years of marriage that day.

My main support system is my family. Lorna, my wife, our daughters Dawn and Donna, and grandsons Wilson, Boston, Emerson, Max, Leo, and others make up my team. They are always available to talk or just listen. The ALS Society has been great too. The mobility aids provided have improved my daily life significantly. The support groups have connected me with so many wonderful people who are going through similar challenges.

Since my time as the Walk Ambassador, I have been a part of many amazing experiences. I attended Quonset Days in 2022, a great fundraiser for ALS. I traveled to Nipawin, Saskatchewan in August 2023 and was honored to witness my niece Marissa marry Tyler. This past New Year, I saw Brett Kissel play at the River Cree Casino and got to meet him. A wonderful visit from my niece, Savanna, and her husband Ryan, who traveled from Chicago, topped off the holiday season. I was also able to volunteer for the NHL’s ALS Super Fund 50/50 in January 2024. It was a great night, not only to see the Oilers beat the Leafs, but also to see the support for ALS.

Recently, seeing one grandson, Boston, and one niece, Samantha, both graduate from High School have been wonderful moments. I will be attending Quonset Days again this July and hope to connect with Brett Kissel again. Beyond that, there are plans for some parties- 1 this September to celebrate my 70th birthday, and 1 in December to celebrate 45 years of marriage.

It was great to attend this year’s Edmonton Walk. I am extremely grateful for the ALS Society and all that they have done for me and my family. They have made this extremely difficult time so much easier.

“One day at a time – that is enough. Do not look back and grieve over the past for it is gone, and do not be troubled about the future, for it has not yet come. Live in the present and make it so beautiful it will be worth remembering. Happiness is a journey, just as life is. Enjoy the ride.”

-Perspectives – 17 things I learned about living your best life while battling a terminal illness” by Wayne Thomas

#MakingItPossible Norma Pratt - June 26, 2024

In 2016 I was diagnosed with a motor neuron disease called Primary Lateral Sclerosis (PLS). I had been experiencing  various symptoms like stumbling, tripping, stiffness, falling, loss of balance, and changes in my speech for a while.

Needless to say, I was surprised, shocked, and totally unprepared for this diagnosis. We knew nothing about PLS, and had never even heard of it before. “What happened for this to happen to me? Where did it come from? What did I do to deserve this?” My family and friends knew something was wrong, but they were just as surprised and shocked as we were.

I have been blessed to have a family that has been able to support me and assist me to adapt to the “new” me. My friends have also been a great source of support.

I was first connected with the ALS Society of Alberta at the ALS Clinic in Calgary. The Society supports people living with ALS, PLS, Kennedy’s, and other motor neuron diseases. Support comes in many forms. They lend equipment to clients at no charge, for as long as needed, provide home visits, information and resources, fund provincial research initiatives, and host support groups for clients and caregivers.

As much as my family and friends were supporting me as best they could, there was something missing. After speaking with Client Services at the ALS Society of Alberta, I decided I would attend the support group. The in-person meetings are held in Calgary, once a month. Family members/loved ones are welcome to join in, which my husband often does.

The individuals in this group were friendly and welcoming. By the end of my first meeting I was comfortable with the group and was already looking forward to attending the next month. When Covid restrictions were enforced, our in-person gatherings ended, but the Society adapted quickly, and began hosting the meetings virtually.

What I love about this support group is that they are willing to share their lives with PLS or Kennedy’s with others. The knowledge that this group collectively holds is amazing! When a problem is presented there are always several suggestions on what to do next or what worked for them. Concerns can range from medications, exercise, travel, preventing falls, home renovations, taxes, facilities, to available support and services, and so many other topics.

Humour plays a big part of every meeting. What is life if you can’t laugh about it!? We can all relate to some degree about everyday trials and tribulations. We hold each other up when needed. We listen and we celebrate each other’s accomplishments and victories.

The benefits of the support group are many. The most important part is that we are all on a journey together with similar problems and challenges.

Thank you to the ALS Society of Alberta for this support group. It has given me new friends to move forward with and enhanced my life with PLS.

#MakingItPossible Patricia - June 25, 2024

Patricia “Pat” was a woman of many roles. As a mother, grandmother “Grama”, great-grandmother “GG”, sister, auntie, friend, mentor, sponsor, and friend, Pat made ripples wherever she went and with whoever she met. These ripples showed others they too could be courageous and kind, defining characteristics of our beloved mother. 

Pat was born in Killam, Alberta in 1941 and soon moved with her family to the new suburb in Highlands. Her childhood was spent much like her adulthood, filled with countless adventures. From a young age, Pat demonstrated a love for movement, learning and connection. In her early years, Pat could be found figure skating, dancing, or enjoying time at the lake. Later in life, Pat often spent time golfing, swimming, and traveling the world. To know Pat was to love her, and admire the tenacity she had for this life.  

As a vivacious, enigmatic, and social woman, Pat was no stranger to speaking to people on a regular basis. When Pat started to notice her voice turning more hoarse, Pat and her family became concerned. These concerns continued to increase as other symptoms emerged, such as difficulty holding a pen, numbness in her tongue and general weakness that came with an intensity that could not be simply attributed to the process of aging. 

Our families fears were confirmed November 2022, when Pat received the diagnosis of ALS bulbar-onset. 

When ALS took away her ability to speak, Pat persevered. Communicating with the many visitors she had with a pen and paper or diligently typing away with her speech-assistance device. 

When ALS took away her ability to walk, Pat persevered. With the support of the ALS Society and their gracious equipment donations, Pat fiercely held onto her independence using her walkers and later her wheelchair to support her in getting to all the places she wanted to be. 
Our family is profoundly grateful for the exceptional support the ALS Society of Alberta extended to our beloved mother throughout her journey with ALS. Their unwavering dedication and compassionate care were invaluable to both Patricia and our family. From providing essential medical equipment including various walkers, a power wheelchair, transfer pole, bath transfer seat and speech amplifier, to offering emotional support and guidance, the ALS Society of Alberta ensured Patricia received the best possible care and maintained her dignity every step of the way. Thanks to their efforts, our Grama was able to face each day with courage and grace right until the very end. On March 1, 2024, at age 83, Patricia passed away peacefully surrounded by her adoring family. Though she may be gone from our sight, Pat will forever remain in our hearts, a beacon of love and light guiding us through life's journey.

#MakingItPossible Tamila Skryabin - June 24, 2024

Tamila Skryabin was diagnosed with ALS in 2019, at just 23, after a long and frustrating search for an explanation of the symptoms she experienced for years already. The news came a month after convocation from the University of Alberta with a B.A. in Psychology and English. The disease forced her to abandon many of her pastimes, including drawing, painting, singing, dancing, and playing multiple instruments, as well as end a long-term romantic relationship and all job prospects.

Now, finding herself with a surplus of time on her hands, she began seriously applying herself to electronic music production, having still been able to use a computer mouse in her wheelchair. Her classical and jazz musical training assisted her in composing in various styles of music. In 2022, she collaborated with the ambient musical project Little Symphony to release the song Sea of Light. All profits are donated to the ALS Society of Alberta. In June 2023, she released her electronic music album, LEGACY, under the moniker “psiloskryabin”. 25% of all sales on Bandcamp are donated to the ALS Society of Alberta. 

She is also publishing a series of fantasy novels, the first being “The Temple of Light”. Having lost the ability to type and write by hand, she will write the next installments with an eye-tracking device, which she also uses to communicate both on and offline. By sharing her creative works, Tamila strives to show that while the disease certainly places many limitations on the one living with ALS, it is still possible to find meaning (in life) in other ways. Your ALS diagnosis does not define you.

Tamila is forever grateful for the support of her parents, family, and family friends, as well as the ALS Society of Alberta. She enjoys watching various media, playing video games, listening to music, and cuddling with her pet hedgehog, Sonya.

LEGACY can be streamed on Bandcamp, YouTube, and SoundCloud.

Sea of Light can be streamed on Spotify, YouTube, and Apple Music.

#MakingItPossible Quonset Days - June 23, 2024

Quonset Days, or as many call it, “The Greatest Outdoor Party on Dirt”  has become one of Alberta’s most impactful ALS fundraisers and community gatherings. This extraordinary event, born from love and remembrance 15 years ago, continues to unite people from all walks of life to support a cause that touches so many.

The heartwarming story of Quonset Days begins with the Biemans family—Janet, Trevor, and Traci—who honor the memory of their beloved husband and father, Peter Biemans, annually. Their journey of grief and love sparked the creation of an outdoor country music festival that has since grown into a beacon of hope for southern Alberta’s ALS community. Their passion and dedication has turned a personal tribute into an iconic celebration and raised over $650,000 to date, all in support of the ALS Society of Alberta.

We extend our deepest gratitude to the Quonset Days Board of Directors, and particularly the Biemans Family. Janet, Trevor, and Traci, your courage and dedication in honoring Peter’s legacy continue to inspire and unite a community that is second-to-none. Peter’s story has touched countless hearts throughout Alberta and created a community that inspires generosity.

To all the volunteers, sponsors, and attendees who make Quonset Days possible: your enthusiasm, commitment, and kindness are the driving forces behind this event’s success. Each one of you plays a pivotal role in creating a memorable and impactful experience year after year. We are profoundly thankful for your contributions and for standing with us in the fight against ALS.

Have you heard of Brett Kissel, George Canyon, and Steven Lee Olson? Reserve your Quonset Days 2024 tickets before it’s too late! RV Camping Passes have already sold out, don’t miss your chance!

For more information, and to buy tickets: https://quonsetdays.com/ 

Thank you to the Biemans family, and to everyone who contributes to the magic of Quonset Days. Your support and dedication are making a brighter future possible for those living with ALS.
https://www.facebook.com/watch/?v=596468245911832

#MakingItPossible Karen Bedard - June 22, 2024

My husband Neill was diagnosed with ALS on August 23rd, 2021. He had been suffering with a loss of leg strength for over a year, but with the pandemic it took time to get proper appointments and, finally, a diagnosis. 

We were living between Calgary (where my family is), Vancouver (where Neil was working as a television director), and Nelson, BC, where we had a house and were planning to retire. 

I was so sure that it wasn’t too serious. I was in Calgary when Neill got his results in Vancouver, from his then neurologist. Neill had polio as a child and it was thought to be post-polio syndrome, which isn’t great, but certainly not life-threatening. 

Before Neil’s diagnosis we both lived very busy lives. Post-diagnosis, Neill continued to work summers in Vancouver on a series he had been with for 11 years. The production team made all the necessary adjustments for Neill to be able to do his job. They built ramps and put up tents to accommodate his growing need for support. I am happy to say he had three great years of working before finally retiring just last month.

I was an Art Therapist in Vancouver before we relocated to Calgary to be closer to my family. I continued to work virtually during the pandemic, but since retired to be available to care for Neill full-time. 

It took some time for us to slow down and adjust to our new reality. Initially, there was so much grief. We needed to process the enormity of what we would be losing. At the forefront, plans for our future and retirement, which weighed heavily on both our hearts. 

Early in our journey, I met a woman whose husband was suffering from dementia. She gave me some important advice, “don’t project into the future, you will be who you need to be when you get there.” I used her words as a mantra whenever I felt overwhelmed and doubtful about my abilities to cope. 

Today, I would also like to add that it does not get easier, but it does get better. So much of my ability to cope was tied up by my willingness to accept our circumstances - and initially I certainly did not! Over time though, I have learned to try and live in the moment as much as possible. An Eckhart Tolle quote I read also helps in those moments of anger or frustration. It goes something like, “If you can’t find acceptance, enjoyment, or enthusiasm in any given moment - you are creating suffering for yourself and others.” I have found that if I can move into acceptance, depending on the circumstances, I can often move into enjoyment and even enthusiasm. 

I have returned to painting,a long-time passion of mine, and Neil is writing a short film that he would like to direct. We both find creativity to be the best way to stay in the moment, finding it meditative and life-affirming. 

We are very fortunate to have good friends and a large, supportive, family. Without them this journey would be much more difficult. We are so grateful to all those who have shown up for us in ways we didn’t even know we needed. Our plans for the future involve spending as much time with them as possible.

Along with our support system, the ALS Society of Alberta has been invaluable, from their quick response to any equipment needs or queries we may have, to the caregiver support groups which, like a community, alleviates the feeling of being alone in navigating ALS. To them, we give our greatest appreciation and heartfelt gratitude.

#MakingItPossible Hashem Melhem - June 21, 2024

ALS used to be something that happened to other people. Distant, unfamiliar people that I would never cross paths with.

Three years ago, when my muscles began to weaken and my body started to fail me, I got a glimpse of what ALS truly is - a disease that robs you of who you were and who you could have been. It takes parts of you, piece by piece, until it feels like there is nothing left but pain and sorrow. 

When the doctors told me my diagnosis, the world shut off around me. “What does this mean? What will happen to my wife? What about my kids? What about my life? Why me?” These thoughts don’t fade away as my ALS progresses, they simply take a passenger seat as I attempt to be present and adjust to a new perspective. 

Last year, I walked my daughter, my baby girl, into her new husband’s arms and prayed he would love her - even a fraction as much as I do. I watched my son embrace his new wife and heard him vow to love and protect her forever. I am so grateful to be a part of those moments. I see parts of myself in who my children have become, and it is an honor to watch their lives unfold. 

Living with ALS has brought with it unpredictability and agony. It took over two years of testing to confirm my diagnosis. It’s  true that it takes a village to raise a child, and it is equally true that it takes a community to manage ALS.  

Something I have come to realize, is that although it is very much my own journey with ALS, it is also our family’s journey. My wife - my unexpected caregiver and absolute love of my life - has shown me more love, compassion, and strength, than anyone I have ever known. My children have found ways to support both me, and my wife during the darkest days of this disease.

The support from the ALS Society of Alberta and ALS Clinic has also been invaluable. They have been a cornerstone of our support network. Their commitment extends far beyond mere advice and the provision of essential equipment and tools.

Alberta Health Services’ (AHS) involvement and their representatives has brought additional relief and optimism into our lives. The therapists, with their refreshing energy and dedication, have taught us how to adapt our home and lifestyle to the evolving needs and challenges brought about by ALS.

Managing ALS requires more than medical treatment. Whether it's family or loved ones making sacrifices to provide care, doctors at the ALS Clinic monitoring every detail, or friends calling from near and far to express their love; each plays a crucial role in crafting a support network that sustains both the body and the spirit.

I worked my whole life with the goal of a restful retirement. This isn't the retirement I've worked for and dreamed of, but it is what it is, and I'm grateful for my wife, our family, and our circle of friends.

#MakingItPossible Monica Dennis - June 20, 2024

ALS was no stranger to my family. My 2 younger sisters had already lived with and passed from it. Melanie, my youngest, first to be diagnosed, lived with ALS for 2 years and passed away on April 10, 2015, at the age of 52. Maureen, my middle sister, was next to live for 2 years with ALS. She passed away on November 27, 2019. Although they lived with the same illness, their ALS journeys were unique. Melanie had difficulties with her extremities and eventually used a power wheelchair. She required a feeding tube, and lived at home. Maureen was unable to communicate verbally and had ALS related dementia symptoms. She was mobile the entire time, but lived in a facility. 

Three years, almost to the date of Maureen’s passing, I received the same fate - Familial ALS. I was officially diagnosed on November 1, 2022. The symptoms I had included a loss of balance, falls, and tremors in my hands. My doctors tried treating me for Parkinson’s disease, but those medications had no positive effect so was ruled out. 

My Clinical team, including the allied health members at the ALS Clinic, and my Community Home Care team have been great supporters in helping me and my husband, Brian, navigate our journey living with ALS. The equipment loaned to us and the social support we receive from the ALS Society of Alberta have been very beneficial. 

I can no longer do some of the things that previously brought me joy, such as driving and playing softball. I have different interests now and, with the help of my supportive husband, Brian, and the mobility equipment I was loaned by the Society, I can enjoy getting my hair and nails done regularly, have weekly lunch dates with my girlfriends, watch Oilers and Blue Jays games with Brian, and get together with friends who I cherish deeply for weekly dinners. Brian and I recently traveled to Mexico to visit friends. We have purchased and are using a special lift called a Multi-Lift to assist me in and out of our vehicle. Without this lift, the manual and power wheelchairs loaned to me by the Society, I would be unable to venture out as often as I do. 

Bob and Candace, Gord and Donna, Eugene and Darlene, and Steve and Shar, and of course, my loving husband Brian, are the greatest friends anyone could ask for. A strong support system is imperative when living with ALS and these people are irreplaceable. To them, I want to say thank you for all of your love, and for bringing Brian and I laughter and new memories. You are helping Make it Possible for me to enjoy each and every day.

#MakingItPossible Jenna Doll - June 19, 2024

I first knew I needed help when I was unable to work the snaps on my new-born son's sleeper. Five months of denial, losing strength in my hands, and deteriorating fine motor skills. This was around the start of 2020, but there were so many things that denial could no longer be an option. I sought medical help with my primary doctor who referred me to a neurologist, who started by admitting me to the University of Alberta hospital. They knew it would be much faster to perform every test under the sun on me as an in-patient, and we would get results as soon as possible. I saw four neurologists in the course of four days. Here I am, 31 years old, with a loving husband, a 2 year old, and a 6- month-old, and I’m sitting all alone being told I have a terminal illness with a short expiry date. My fight or flight instincts kicked in, I wanted to wrap up my loved ones and flee. So, we packed up and went to the lake to absorb and process this devastating news. Two weeks later, it was time to meet the team at the multi clinic and start our ALS journey. June 19, 2020 -  it was the hardest day of my life.

I am a mother and wife first. I like to knit… (just kidding, you would need hands for that)! So instead, I started tattooing my arm. I proudly salute ALS [through a tattoo] on my middle finger every day. My family is always numero uno, we just keep living. I am still Jenna, wife, mother, and Bad Ass! I have a young family that needs me. I run my household every day by being present, planning, scheduling, and making sure my kids have a normal upbringing. 

I have the best team on this earth. We went the route of self-managed home care, which allows me to remain home until the bitter end. With this program, I have hired my own care team who love me and care for my best interests. We are supported by the ALS Society, with the Equipment Loan Program and support groups for myself and my caregivers. My community continues to support me every day with their generosity. 

We are blessed with the ALS Society of Alberta, especially through their Support for Champions program. This program helps to ease some of the financial burden of my children's activities, like swimming, skating, gymnastics, and soccer. Programs like these Make their activities Possible. Over the years, they have provided me with loans of wheelchairs, walkers, porch-lifts, a sit-to-stand hoyer lift, and much more. This Makes living at home Possible. I have been the Wainwright Walk Together for ALS Ambassador for the last three years, and through these efforts we have raised nearly $50,000 for the ALS Society of Alberta.

In the past year I have been a part of a drug trial that unfortunately was unsuccessful. I have participated in research studies for early detection of ALS systems in the brain.  I am on all the ALS medication. Otherwise I remain on IV infusion of Radicava and oral Riluzole along with a medical cocktail that could put down a horse. All of those extras keep me from laughing at a funeral, crying at a kids movie, and keeping my T-Rex arms at bay. (insert t rex and laughing emoji)