ALS Society of Alberta Board of Directors Chair, Nancy Lyzaniwski, would like to take a moment to thank everyone for their time, energy and dedication as we returned to in-person events this past summer.
Thank you!!!!!
Cruising for a Cause - July 2023
On July 1-7, 2023 join Expedia Cruises in Chestermere to support the ALS Society of Alberta onboard Holland America Lines’ beautiful ship the Koningsdam, sailing Alaska roundtrip out of Vancouver. A portion of each fare will go directly to ALS Society of Alberta. Dean and Karin Wallace and Expedia Cruises in Chestermere are the organizers of this event, and they have been touched by ALS multiple times over the last 15 years.
In 2005 Dean’s Dad, Glenn was diagnosed with ALS and passed away in 2006. In 2016 Dean’s sister, Karen was also diagnosed with ALS, and Karen and her family were supported by ALS Society of Alberta until her passing in 2017. In 2018 Karen’s husband and sons started the Karen’s Purple Shirt Party to raise awareness and funds to support ALS Society of Alberta. In 2019 Dean’s cousin in another province was diagnosed with ALS and she also lost her battle. And in 2020 a good friend of theirs was diagnosed with ALS and continues to battle the disease, again with support from the ALS Society of Alberta.
Losing so many loved ones to ALS, Dean and Karin have truly felt the impact of the disease. Keenly aware of the work that ALS Society of Alberta does for people and their families living with ALS, the couple wanted to support the ALS Society in some way. Karen remembered the Ice Bucket Challenge and as a travel agency owner thought it could be taken to another level in the Ultimate Ice Bucket, Alaska.
The 7 day cruise from Vancouver to Alaska will be a beautiful trip with a philanthropic purpose for many on board. For more information on how you can join in the ultimate ice bucket without getting wet, please contact Expedia Cruises in Chestermere: chestermere@expediacruises.com or 403-263-3500.
Quonset Days 2022
Quonset Days has been such an awe-inspiring and hugely beneficial event since its inception in 2010. The Biemans family (and countless amazing volunteers) have put together something truly special: hundreds of people dancing, singing and drinking to some authentic Canadian performers, with every cent raised being donated directly to The ALS Society of Alberta. This years’ festivities resulted in a whopping $65,000 donation, making the total from all Quonset Days over half a million dollars! So many people came together to make this possible, including attendees, sponsors, volunteers, vendors, and board members. We are thankful for each and every one of them, and so are the families we support. Quonset Days is not only a beacon of positivity on its own, but the funds raised from each event go towards drastically improving the quality of life of so many Albertans.
We can’t wait for next year! Thank you, Quonset Days!
Lethbridge Walk Together for ALS - This Weekend!
We are so excited to be back in Lethbridge this Saturday! Check the agenda here for complete details. Registration is still open - on-site sign ups will be available, but to ensure there’s enough food for everyone, online registrations in advance are greatly appreciated! For all additional info and the link to register, please visit the registration page.
We hope to see you there!
Meet the Lethbridge Walk Together for ALS Ambassador - Michael Webber
My name is Michael Webber and I'm 43 years old. My ALS, thus far, has affected my legs and lower back.
When my wife was asked by the ALS Society if I would be the ambassador for this year's event she laughed and said "yea - no. That isn't something Mike would ever be interested in." When she came to me and jokingly asked if I wanted to do this I think I almost gave her a heart attack when I said "sure, why not?".
They say this disease is rare and yet I am the 8th male in 3 generations of my family to receive this diagnosis. My symptoms first presented as hamstring and hip pain. We thought it was because I was working a very physical job on a drilling rig. One August night in 2021, while we were out with friends, my limp suddenly got worse to the point where I was nearly falling over. It was the first inkling that something might actually be wrong.
I made an appointment with my wife’s massage therapist who specializes in nerve pain the next day and he immediately identified the issue as neurological and (to his credit) refused to treat me until I had seen my family doctor. Thankfully my doctor was able to see me the next day and referred me to the ALS Clinic in Calgary and we had the foundation for a diagnosis by October 2021.
While this has been the hardest and most devastating thing we have ever had to face, we are very grateful for the support of our family, our friends, and the ALS Society. The funding that the ALS society receives helps provide walkers, wheelchairs, stair lifts, and more to make life just a little more bearable for ALS patients. But most importantly those funds go towards research that will someday hopefully find a cure for this awful disease, most likely not for me, but hopefully for my son, my nephew and all the other men and women who'll have to go through this in the future.
Register for or donate to the Lethbridge Walk here!
ALS Society of Alberta 2022 Event Survey
If you participated in one of our Walk Together for ALS events in 2022, or Betty’s Run for ALS in Calgary, we would love to hear your feedback! As we returned to in-person events after a two-year hiatus, it was so wonderful to be back in person. Every location was a bit different this year - some were almost identical to pre-pandemic events, while some were smaller than previous years, or had different locations, or perhaps the event program was different - whatever the case, we would love to hear your thoughts.
Please fill out one of the following surveys to have your opinions noted as we start planning for 2023.
Edmonton Walk Together for ALS: participants please click here
Other Walk Together for ALS locations across the province: participants please click here
Betty’s Run for ALS: participants please click here
Thank you!
September Walk Together for ALS Events in Lethbridge and Hinton
We still have two events remaining in the 2022 Walk Together for ALS season! The events all summer have been so successful but also meaningful, as we were able to once again gather as a community in support of our loved ones living with ALS, and also in memory of those we have lost.
Please join us in Lethbridge on September 10th or Hinton September 18th to help raise funds and awareness for those in our province living with ALS and their families.
We can’t wait to see you there!
Making It Possible 2022- Thank You!
As we come to the end of ALS Awareness Month, and in turn our Making it Possible Series, we wanted to take this opportunity to say Thank You.
Thank you for sharing your personal stories with the ALS community and “Making Possibilities”.
As we look back on June, thank you to all our event participants, Ambassadors, volunteers, committee members, donors and sponsors – you helped make our Walks and Runs during ALS Awareness month incredibly successful. Your continued support means that Albertans living with ALS can continue to have the ALS Society of Alberta in their corner while also funding research to help find a cure. We are still finalizing totals, and still have two walks to go in September. It has been great to be back in person.
Making it Possible is a series that was created as a way for our families to share their stories. We are moved year after year by the positivity and hope shown by our community. They truly show the possibilities of life, even when living with ALS – of the joy, the sadness, the hope, and the love of family and friends. Our community teaches us every day about how to truly live, and strengthens our commitment to fulfil our mission – to make each day the best possible day for those living with and affected by ALS.
Making It Possible Day 30 - Board of Directors
Today for our Making it Possible series, we would like to recognize the dedicated members of the ALS Society of Alberta Board of Directors.
Thank you to the ALS Society of Alberta Board of Directors, for leading the Society to provide the best possible supports for our families across Alberta and fund ground-breaking ALS research.
Our incredible leaders are: Nancy Lyzaniwski, Cathy Martin, Gord Banting, Tara Pentney, Heather Haddow, Jim Robinson, Kimberly Howard, Pamela Keenan and Tom Gee.
This impeccable group of individuals dedicate countless volunteer hours to lead the Society to “Make each day the best possible day for people affected by ALS.” Their constant and unwavering support led us through the unprecedented pandemic and ensured the team had the support and tools to continue to support our families.
We are so thankful for their service – in the words of Margaret Mead…
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”
Making It Possible Day 29 - Renee Maess
My name is Renee Maess and I came to the society just over a year ago. I had spent 13 years supporting kiddos and their families within the school board prior to coming here. I was able to advocate for families to receive much needed services for their children experiencing various physical and emotional challenges. My shift to working with adults has been such an amazing experience. The strength and resilience in people fighting ALS is something unimaginable to witness.
Having lost my own family member to a motor neuron disease, and seeing their need for services, I felt so privileged to become part of this organization. I get to participate in filling those gaps with equipment, peer support groups and advocacy. This year was my first opportunity to attend in-person events like the walks and the feeling of community there was so strong. I enjoyed seeing your smiling faces greet one another, and myself, after a year of meeting you over zoom at our coffee group. I am thankful for every hug you shared with me that day, every zoom I spend with you, and all the parts of your lives you choose to let me in on… when you have a new grandchild on the way… when you are joyful about having Burger Baron…when you have hard days and ‘just need a chat’.
I know this is supposed to tell you about me…why I am here… why I have stayed…? Because of you. This beautiful community you have all built.
Making It Possible Day 28 - Trevor Wright
Trevor has been our Equipment Coordinator for almost a year: 11 months as of July.
“My favourite memories are any time I get to deliver a piece of equipment to our clients and the many ways these items can positively impact not only our clients quality of life, but the whole family’s as well. The sense of freedom and independence these items can provide to our clients stresses how important the equipment loan program is and encourages me to strive to create the best program possible for our clients and families.
I got to deliver a manual wheelchair to a client, and seeing her face light up when we delivered a hot pink wheelchair, was one of the most fun and heartwarming moments. Not only were we able to provide a wheelchair that would fit her much better than one she currently had on loan, but she was over the moon with how fancy the hot pink wheelchair would make her look.
I’ve always found value in doing something to make a difference in the lives of others, particularly those facing increased adversity, and the ALS Society seemed like such a great place to contribute to that work. I am constantly astounded in the strength and support of the clients, families and staff going through this journey and really wanted to be a part of that. Getting to see, on a daily basis, the impact the Society can have is what keeps me waking up in the morning and coming to work. I couldn’t think of anything else I’d rather be doing.”
Making It Possible Day 27 - Jody Round
In honour of my Dad, I have become an active part in helping plan the annual Edmonton Walk Together for ALS, becoming the Edmonton Walk Committee Chair.
My dad was diagnosed with ALS in the Summer of 2012. Watching him live with ALS and how great the Society was at helping every step of the way I knew this was an organization I had to be involved with. They are genuine people who help those living with ALS live each day as best as they can. They supported our family so much by caring and making sure my dad had everything he needed to live each day the best that he could. My family will always be grateful to the Society for this.
I will continue to help those living with ALS by being a part of the Edmonton Walk committee for as long as they will have me. I do hope for the day when there is no Walk and no money to be raised because they have found a cure.
What a day that will be.
Making It Possible Day 26 - Karen's Purple Shirt Party
Karen Wagenaar was only 47 years old when she diagnosed with ALS and sadly lost her battle 13 months later in 2017, leaving behind a husband and four boys. Karen fought ALS with courage and her faith. Karen’s Purple Shirt Party was conceived as the first anniversary of her passing approached, to be a time of healing with family and friends - a backyard celebration of Karen’s life. The idea to add a fundraiser was a last-minute thought, but has had a lasting impact. The Wagenaar family has made it their mission to do their part in solving the puzzle of ALS, raising awareness and funds to ensure people living with ALS have the tools and support they need.
The Wagenaar family raised over $25,000 that first evening and Karen’s Purple Shirt Party was established as an annual fundraiser. As Karen was a fan of all things hockey the family added a 3 on 3 ball hockey tournament in 2019. Karen’s 3 on 3 for ALS was born!
After two hard years living through the pandemic and cancelling the 3 on 3 tournament, the restrictions were lifted and the Wagenaar family started planning Karen’s 3 on 3 for 2022. This year, Karen and Rick’s son Gerad Wagenaar stepped up and took on the massive role of planning and execution of the event. From sponsorship, marketing, food and event permits to planning the 3 on 3 tournament, Gerad ensured every area was covered and with the help of family and friends, had an amazing, successful event.
Gerad took Karen’s Purple Shirt Party and made it into an event that really reflected his Mom’s love of hockey, and her joy watching sports with her boys or watching her boys play. His commitment, dedication and thoughtfulness brought Karen’s 3 on 3 to a new level.
Thank you to Gerad, his family and friends for making possibilities for families affected by ALS.
Making It Possible Day 25 - Michelle Savard
My name is Michelle Savard and I have had the privilege of working with the ALS Society as a Client Services Coordinator for 4 years. I was drawn to the opportunity to be a part of a team that serves families on their journey living with ALS.
I was compelled by the opportunity because my mom had ALS. When I reflect on that time, one memory stands out above all others. My sister and I were helping my mom, and, as it sometimes happened, we were struggling to find the best way to help her. Despite the awkwardness and our struggle, the three of us broke into giggles that started with my mom. Memories of those light moments, despite all the difficulties that ALS brought, forged a lifelong belief in the power and impact of a moment.
So many moments that families have created and shared stand out in my time with the ALS Society. The moments and their impact can be hard to describe, it’s a feeling, and it’s palpable.
It’s receiving a picture via text of a client joining the family dog walk again with the scooter they just received from the Society and looking so very happy. It’s hearing the joy in someone’s voice when they tell you they could BBQ again, for the first time in 2 years, because of the functions their power wheelchair has and the ramp that was recently delivered. It’s hosting a support group and hearing someone say that, since their diagnosis, they assumed they could not travel again, but after hearing in Support Group how others managed it, they felt more hopeful about it. It’s those times when ALS Society team members, and vendors, and other services, like Home Care and the ALS Clinic, work together to get someone that piece of equipment that they need urgently.
It’s the feeling of community, support, and care.
I have learned so much from the families we serve, about their journeys, about how to hold space, about how be of help, about taking in the moments.
Making It Possible Day 24 - Mike Centeno
My name is Michael Centeno, I came from the Philippines and have been here in Canada since October of 2007. I am a father of two - my son Mikhail is 24 and my daughter Maia Mikaela just turned six years old. I first came across the word “ALS” during the ice bucket challenge phenomenon, but honestly I didn’t pay much attention to it until sometime around summer of 2018 when I started googling about the weakness in my left hand. I started researching about arthritis, carpal tunnel etc. until it becomes serious researching about MS, ALS and the likes. So I became a little bit familiar with those diseases, but totally dismissed the idea that I might actually have one of them.
Growing up in Philippines I had never heard of someone affected by ALS, which gave me confidence I didn’t have those kind of illness. Even when I brought it up with my family physician here in Calgary, he said “no it’s very rare and you’re Asian, which would be even rarer.” That gave me some relief Until January 15, 2020 came, and the neurologist told me the diagnosis. It felt like the world came crushing down on me, no words came out just tears as I hugged my wife and my daughter.
The drive back home seems like it took forever and everything was blurry. Still hoping that what just happened is just a bad dream and I would be waking up soon. The first thing I did when we got home was to pray in our little altar. I didn’t ask God why, instead I said thank you for giving me this trial, just please make it easier for me and my family. I truly believe that those who were given some difficulty in life will reap a reward from God. So many sleepless nights and overwhelming emotions followed but after a week I came to the realization that my family needs me especially my daughter. That I need to make the most of it while I still can and still have strength in me. I excitedly planned and booked multiple family trips but then covid came and halted everything. It’s a huge setback but it’s still an opportunity to spend more time with my family.
I’m enjoying lots of fun time with my daughter by driving her to school until one of my doctors refrain me from doing so. I was crushed and heartbroken even if I beg him to give me couple of months more until my daughter finish the school year, and told him I wouldn’t compromise her safety if I knew I could no longer do it safely. But it is what it is, I need to follow and not to complicate things further. I’m also very fortunate to be part of the clinical trial medication, oral Edaravone. I am the 177th participants out of the 180.
I am so glad that a lot of people are very supportive with people afflicted with ALS and their families. The ALS clinic, the home care OT, most especially the ALS Society of Alberta for their all-out support from the very start. They’re beside me as my disease progresses. From the very small pieces of equipment to complicated and expensive ones. We even brought some with us on our trip back to the Philippines and made it easier. I got to attend the Calgary Flames game through the generosity of Mikael and Frida Backlund, we really had a great time my daughter even yelling “best night ever” while munching on nachos and cheering for the Flames. It’s really heartwarming to know that a lot of people outside of family and circle of friends care.
Life’s journey is not always a bed of roses especially if someone is ill in the family. Mine is no different but with my wife Mia always on my side everything seems to be easy. Her caring and sacrifices go above and beyond, setting up a makeshift bedroom on the main floor so I don’t need to go upstairs and trading a nice comfy bed to an air mattress just to be by my side every night. I would say that every Filipino couple’s dream is to make a family and have at least one child to care for them when they get older. I’m so lucky to have two, my oldest Mikhail who is old enough, did not hesitate to step in and help. But I couldn’t imagine my daughter Maia that an early age was already obliged and would willingly care for me. In one of our conversations I asked her what she’s want to be when she grows up? And she said “I want to be a doctor someday, I’m actually practicing now to become one by taking care of you”. That melts my heart and brings me to tears.
Sometimes I couldn’t help but ask, why life seems to be so unfair. Nobody deserves to suffer, especially little kids. But it always comes back to the answer that, everything happens for a reason and in God’s perfect timing everything will be alright.
Making It Possible Day 23 - Heather and Ruth Cole
Heather’s journey with ALS started 22 years ago on April 19th, 2000, when her mother Ruth Cole was diagnosed with bulbar onset ALS. Ruth once said, “This disease will kill me, but it won’t kill me today.” The disease quickly took her ability to speak and swallow on her own, but Heather recalls her mother taking these times in stride.
“The ALS Society was extremely helpful in getting us equipment and aids to communication and Jane Rivest was a godsend! My mom, her friend, and I went to the William Watson Lodge in Kananaskis for a weekend. Her colleagues from the Calgary Zoo came to the house to sing carols for her the Christmas before she died, so about 20 people were crammed into the living room. She loved it. We had a chair lift installed and my niece treated it like a carnival ride, which gave my mom a giggle. And we had a terrific home care attendant, Janice, who looked after her, so she could stay at home through the course of her disease.”
Ruth went on to be the Betty’s Run ambassador in 2001, participating with her husband of 36 ½ years, her two children Heather and Bruce, and two grandchildren. She continued to fight before passing away on January 26th, 2002. Heather has since participated in every subsequent Betty’s Run, 22 years strong. She currently lives in Saskatoon, and has travelled with her friend (also named Heather) several times to participate, as well as donating thousands of dollars across the years.
“I’ve never lived in Calgary since I’ve attended the run, so I’ve always travelled to get there. And I’ve always had people who donate from other cities, depending on where I’ve been living at the time. One year, I had just arrived from a trip to England, so did the walk with terrible jet lag! I know there are lots of people who are just as dedicated as I am about raising funds for Betty’s Run and taking part every year, even after losing their loved one(s) to ALS.
I had a cancer diagnosis just before COVID started, so I’m being extra careful about gatherings, hence the virtual run again this year. I’m doing fine, but exercising caution.”
We’d like to give a heartfelt thanks to Heather Cole, her family, and all those who have donated to her and her team over the years. Her constant support and dedication in the face of adversity is truly inspiring.
Making It Possible Day 22 - Quonset Days
Peter Biemans passed away in August 2009 after a hard-fought battle with ALS. ALS is a disease that leaves the affected completely dependent on others, trapped in a body that they can no longer control. To watch Peter turn from an outgoing, active person to someone who could only sit and watch the world go by was absolutely heart-wrenching.
The Biemans family wanted to raise money and awareness for the ALS Society of Alberta while celebrating the life of a truly wonderful man. With their local Walk cancelled, the Biemans family decided to fill the gap left by that event and Quonset Days was born. The first Quonset Days was organized in 2010 in only a little over a month and over $7500 was raised the first year!
In 2016, the Biemans family realized that Quonset Days had grown so much that they required help with organizing the event. Thanks to some great friends, the Quonset Days Board of Directors was formed. Their goal with their board is to continue making Quonset Days better every year. Quonset Days has grown to include a silent and live auction, kick-off party, live bands, crazy games, beer gardens and camping. The event is held on the family farm – It truly is the “Greatest Outdoor Party on Dirt”!
Quonset Days has become one of the biggest events supporting the ALS cause in Alberta.
Thank you to Janet, Trevor, Breanne, Traci & Brandon for making possibilities for our families. To learn more about this year’s event, visit quonsetdays.com
Making It Possible Day 21 - Ralph Scott
Hello, my name is Ralph Scott and the journey to my ALS diagnosis began with several years of health issues. My previous family physician dismissed issues due to me being a Type 2 diabetic and upon his retirement I was lucky that Dr. Gradwell agreed to take me on as a patient. The first thing this new Dr said to me was “go ahead and tell me how you’re feeling, I’m listening”. What a complete 180 as my previous physician always said “listen to me”. During the introductory appointment we reviewed my medical history, weight loss and he advised me that my calcium levels were quite high going back to 2007. Several months later after surgery for “hyper parathyroidism” the little toe on my right foot didn’t feel right. After consulting with Dr Gradwell a referral to Alberta Neurological Centre was booked. In November 2021 after 2 consultations, I was diagnosed with ALS. At first, I was devastated, but the more I thought about it the more it made sense. My main concern is for my wife, Susan, and our family as I was worried about them and our future. As time goes by, I’m more accepting of my condition and what is in the future for us.
In my career in transportation, I’ve worn many different hats from driver/owner operator to administration of various companies. I ask myself if the petroleum and chemicals where we were required to top load the tankers without proper personal protective equipment played a part in ALS.
In 2018, Susan & I downsized and moved into a new home in Mahogany, which turned out to be a blessing due to proximity of the ALS clinic at South Calgary Health Campus. In 2019 our miniature Daschunds; Fiona & Kelci came into our lives, originally we had planned on only one puppy. Fiona chose Susan, and Kelci chose me. As we were leaving discussing which puppy we wanted the breeder messaged us asking if we would consider both puppies. Kelci was born with a congenital eye condition and she was concerned no one would adopt her and did not want her to be alone - we agreed and there’s not been a dull moment since! We are also very thankful that just prior to the diagnosis, my daughter, son-in-law and granddaughter Aurora moved back to Calgary from Victoria. My son also lives in the city so is wonderful to have such a great support system.
Upon being diagnosed, the support system through the ALS Clinic as well as the ALS Society was activated within days. I am so thankful for everyone who has become part of my care team – all are so dedicated, compassionate and sincere beyond belief. Currently, I’m undergoing Radacava treatments which require infusion for 10 days within a 14 day period followed by 14 days off. I am also participating in a clinical trial through the University of Calgary with Berchman and Janet.
There are two things in life that I believe, one is that the journey of your life is a path already planned for you. Second, a colleague once said to me that “adversity doesn’t build character, it brings it out”, I believe this to be so true. Throughout our lives we experience many forms of adversity and grow and learn from from it. It would be easy for me to be in a room with the lights turned off and hugging my knees rocking back and forth, this would accomplish nothing. I choose to accept the challenges I’ve been dealt and be forever grateful for all that I have in my life rather than mourn what I’ve lost.
Making It Possible Day 20 - The Pisko Family
Mary Pisko loved flowers, working in the flower department of the Okotoks Safeway for 10 years until 2008. She was a mother of four, a devoted wife to Tom, and a strong woman who was not one to complain. However, one year after she finished working as a florist, the day before she turned 60, Mary was diagnosed with ALS.
Mary’s battle with ALS was, like it is for so many, a short one. But as Tom recalls, she never complained about having ALS, and she remained at home and cared for by her family. She was only in hospice for 24 hours before she passed in 2011 at the age of 61. Ten years later, Tom makes the astute observation that “After spending your life with someone, the loss of your loved one to ALS never goes away.”
Tom was blessed to remarry following the loss of Mary, and his wife Carolin is a talented quilter who has been perfecting her art for the past 50 years. When Carolin quilts, she likes to focus on the person she is making the quilt for, sending out positive thoughts for everyone affected. The quilt pictured above is in memory of Mary, done in the cornflower design both in honour of Mary’s love of flowers, and also the fact that the cornflower is the ALS symbol. The beautiful flowers all over the quilt are a true work of art, and an homage to Mary and other friends they have lost to the disease.
The quilt was a collaborative project with friends Tammy and Lynda, who took on different components of the quilting. It is a gorgeous piece of art, and we are so humbled that Tom and Carolin would like to donate it to us at the Society to use as a fundraiser. We are still confirming the date and location as to where this will be auctioned or raffled, but we will be sure to make an announcement!
Thank you Tom and Carolin for sharing your story and your talent. This gift will certainly make a difference, and all in Mary’s memory.
Making It Possible Day 19 - Mikael and Frida Backlund
Mikael and Frida Backlund have been making possibilities for our families since 2015. In honour of Frida’s mom, they have dedicated their valuable time and effort to support families affected by ALS in Alberta.
In addition to donating funds and hosting events, they generously provide a night out for families to spend together and enjoy a Calgary Flames Game. 74 families from across Alberta have had the opportunity to attend a game over the past seven years .
Frida organizes annual events to create awareness and raise funds for programs and research.
Mikael and Frida not only support the work of the Society but more importantly, make memories for our families to keep forever.
Mikael and Frida support the ALS community in every way and even through the pandemic found ways to support families in Alberta.
Thank you Mikael and Frida!