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.

Game #1,000! Congratulations, Mikael Backlund!

Congratulations Mikael Backlund on your 1,000th Calgary Flames game! Not only have you built a legacy on the ice but you have changed so many lives beyond it. Thank you, Mikael, and Frida, for MANY years of unwavering support and compassion, for standing with us through this journey, and for showing the world the power of your kindness.

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)

#MakingItPossible Larry Heron - June 18, 2024

Edmonton’s annual Walk Together for ALS on June 8 was a chilly and wet one - but that wasn’t stopping over 700 supporters from showing up to Rundle Park. Our team, Heron’s Heroes, were a small part of that event - our first experience seeing all the volunteers ensuring it ran smoothly - from parking, to registration, and serving food. Kudos to all of them. 

We proudly wore our purple Walk Together for ALS shirts over the top of rain jackets, as well as multiple layers of clothing… Our team, Herons’ Heroes, was organized for my husband, Larry Heron who was diagnosed with ALS in 2023. Our daughter managed the large team of over 45 participants, overseeing the many generous donations that raised over $10,000 for the very worthy ALS Society of Alberta. Seeing all the participants was a very humbling experience as everyone there was touched by ALS in one way or another. 

We are overwhelmed with the countless number of specialists helping us throughout our ALS journey. Our equipment requests have been met with the utmost speed by ALS Alberta, making it possible for everyday life to be the most enjoyable. The ALS Society of Alberta is a very positive and helpful organization, one which we had minimal knowledge of prior to Larry’s diagnosis.

Doctors and specialists in every field that this disease impacts meet with us regularly from the ALS Clinic. Each visit leaves us with so much gratitude. We are able to leave feeling uplifted and part of a large research facility trying to find some resolution to this cruel disease.

#MakingItPossible Zeljko Matijevic - June 17, 2024

The sun streams through trees outside Zeljko’s office window, the leaves creating a shadow dance on his hardwood floor. A large TV sits between two of the windows, but the sunlight doesn’t distract Zeljko as he concentrates on the man on the screen, who is sharing a dream he had last week. When the man finishes, Zeljko looks down to his iPad and uses a stylus to peck out the beginnings of a question that appears on the screen, beside the man. Zeljko has been a psychoanalyst for 35 years and had a thriving practice up until he lost his voice to ALS.

It’s been eight years since Zeljko was diagnosed with ALS, and seven years since he was able to speak. A huge blow for a psychoanalyst with a full slate of clients. Clearly not easily deterred, he keeps up his practice, iPad in hand. Adapting to this new reality Zeljko begins conducting his sessions with the help of predictable text and a healthy measure of patience. Not ideal, but certainly effective. Helping his clients gives him such joy and satisfaction.

After he was first diagnosed and registered with the ALS Society of Alberta, Zeljko would cycle to support groups in his recumbent electric bike - committed to using his legs as long as he could. Support groups became a lifeline for his own resilience as he connected with others going through similar experiences.

Since then, ALS has slowly taken his legs and arms, so, for the past several years his “go to” mode of transportation has been a power wheelchair loaned to him by the ALS Society of Alberta. Living close to the Bow River, the power wheelchair Makes it Possible for Zeljko to go for outings along paved trails, stopping occasionally to take photos with his camera of the beauty around him. His hands are now so weak that he struggles to drive the power wheelchair, relying on his wife Maggie or a caregiver to drive it from behind. Long gone are the days when he could press the shutter release on his camera. And it is more and more difficult to hold the stylus that is his communication lifeline. ALS is such a cruel disease.

Long ago, Zeljko and Maggie renovated his office, turning it into a bedroom, bathroom, and sitting area where he continues his practice today. This way he doesn’t have to use the stairs in their two-story home. He currently needs a sit-to-stand-lift to transfer in and out of his power wheelchair, and soon will need to use the ceiling track installed by the ALS Society of Alberta. Recently, the ALS Society of Alberta loaned him a different power wheelchair with more functions that Make it Possible for him to be more comfortable, whether at home or on outings along the river.

The man on the screen is Zeljko’s last client. Even though his practice gives him energy and a sense of purple, he can now manage just this one client. Using his stylus to type has become so tiring, and his diminishing control is frustrating as communication is slow and stilted. But Zeljko soldiers on, committed to doing what he can with what he has. And the ALS Society has helped to make it possible for him to stay at home and live life to the fullest.

#MakingItPossible Mike Centeno - June 16, 2024

My daughter was just 3 years and 8 months old when I was diagnosed with ALS. Back then she was innocent to the fact as my mobility issues were not overly visibly obvious. As time went on, due to her curious nature, she started realizing that something was wrong with me. We decided that we need to start telling her about my condition and the eventuality that it entails. 

In hindsight, I think our approach was somewhat wrong or too blunt for her fragile age to handle. She developed anxiety and fears about losing someone and death. It was really difficult during that time because of the pandemic. Resources were very limited and we were both stuck at home as her school was closed. When the restrictions eased, we were approached by our ALS Society of Alberta client services coordinator about one of their programs called Support for Champions. We immediately thought that it was really a great opportunity. We had to choose activities that Maia might be interested in. 

We had given her a small piano for her 5th birthday and enrolled her for a piano lesson. She was really doing great, so we decided to get her a real piano as an early gift for her 8th birthday. She is also taking dance classes and swimming lessons now. She is really doing great and has overcome all of the negative thoughts she had before. She has really come to terms with what's going on with me and she is also my little caregiver. 

I am really grateful for the ALS Society of Alberta. They are not only helping people with ALS but they also have the Support for Champions program for the children of those affected by ALS. I would also like to thank my wife for all that she does for us. Working full time, she takes care of the house and me. And still she manages to bring Maia to her piano and dance classes twice a week, and swimming lessons once every two weeks.

#MakingItPossible Wayne McCrackin - June 15, 2024

“My name is Wayne McCrackin and I am honored to be the 2024 Red Deer Walk Together for ALS Ambassador. I hope that sharing the story of my ALS journey will bring some hope to others currently traveling down this same road.

My life up to this point has been blessed with exceptionally good health, including a significant amount of physical activity as I was in the construction industry. In 2022, I noticed some diminishing strength in my hands and arms when opening a water bottle or simply getting the lid off a jar. I also began to lose weight and my family began to comment that my arms and shoulders were getting thin.

I also had several falls during this time, as it seemed my balance was not what it used to be. In early 2023, I made an appointment with my local physician in Innisfail who took my concerns very seriously and ordered many tests to rule out reasons for my weight loss and failing strength. In April of 2023, my doctor booked me in for an EMG with a specialist in Calgary to test for ALS. At the end of that appointment, the specialist compassionately told us that he was 99% convinced it was ALS.

Words will never convey the emotions that my wife Evelyn and I felt at that moment. Life up to this point was amazing. We have two wonderful daughters who have gifted us with six beautiful grandchildren. Our lives revolved around them and their extended families.

I was soon booked in for confirmation of my ALS diagnosis at the South Health Campus in Calgary. There, we were treated with the utmost respect and genuine compassion from the moment we arrived. The ALS Society of Alberta has supported us beyond anything we could have imagined! We receive regular phone calls and visits to see how we are doing - the support we are getting from this Society is amazing – they even laugh (politely) at my silly “dad jokes”.

I am extremely fortunate to have support coming from so many people, but first and foremost, my family! Evelyn is a former nurse who has come out of retirement to care for me – she even has an “ALS Everything Binder”! My daughters Erin and Rachelle and their families have been there for me in amazing ways. My extended family calls and texts me regularly with words of encouragement. I have been blessed with a huge circle of close friends in several locations where we have lived and worked. I traveled with a group playing music and am fortunate to have made many close friends from this over the years. For over 20 years, I have worked for Corrections Canada and have developed many great friendships there. After my diagnosis, they organized a fundraiser to send my family and me to Seattle for two baseball games. This is a memory that each of us will cherish forever!

Admittedly, I am devastated to have ALS, however, the ALS Society of Alberta makes dealing with everything so much easier. My family and I are so grateful for supporters of the Society – both in their quest to help people living with ALS and in their determination to find a cure. I look forward to seeing you at the Red Deer Walk or group meetings supporting this cause."

- Wayne McCrackin