The Lethbridge WALK for ALS raised $35,000 on Saturday morning, and counting! Congratulations to top fundraiser Joyce Berg on your achievements, and thank you to the Thom family and friends for your continued support with the WALK! Thank you to all donors, participants and sponsors!
It was an incredible morning at the Hinton WALK for ALS on Sunday, raising $8,500 and counting! A huge thank you to our Hinton WALK Ambassador Helen Banks, WALK coordinators Deena Fuller & Sandi Rasmussen-Connolly and to all donors, participants and sponsors! Great work to all the teams that participated including Kickin’ It for Kenny and Helens Heroes!
This year marked the fifth and final Big Drew's Big Ride in support of the ALS Society of Alberta. Event organizer, Jim Robinson, created this event with his best friend Drew, after Drew was diagnosed with ALS. Five years later, this event has raised over $58,000 for ALS, has brought over 100 riders together of all ages that have clocked thousands of kilometers along the Legacy Trail. Thank you Jim, for your incredible dedication over the past five years. What a beautiful tribute to a beautiful friendship.
Thank you Crescent Point Energy for supporting the ALS Society of Alberta through the CalFrac 150 Putt Fore Charity! An exceptional $1,875 was raised!
Wow!! We are completely blown away by the generosity from the golf tournament on Tuesday! $4,800 was raised along with an additional $450 that was graciously donated by the 50/50 winner, bringing the total to $5,250!!
Thank you to Jeff Goyer, Kelsey Smith and everyone on the AOC board committee for all your hard work and incredible support!
We were honoured to attend the annual Howard Smith Memorial ALS Team Roping on Sunday and accept a cheque for $2,475! Thank you to the Smith family for all that you do to raise awareness and funds for ALS.
We had a great day raising awareness and funds for the ALS Society of Alberta out at the RFP Skip Hayden Memorial Golf Tournament! This was the second year the Society partnered with the tournament, and was able to raise $218 through the 50/50! Thank you to everyone who supported the ALS cause, and came out to this incredible tournament!
We are thrilled to be a part of the Shaw Charity Classic Birdies for Kids fundraiser this year! Donations made to our organization through the online portal will be matched up to 50 per cent! Click here to donate:
The Hinton WALK for ALS is happening on September 9th and we'd like to introduce our 2018 WALK Ambassador for Hinton, Helen Banks.
"My name is Helen Banks and I am honoured to be the ambassador for the 2018 Hinton Walk for ALS. ALS is a progressive neurodegenerative disease that has taken away much of my mobility and ability to do things for myself. As there is no cure, the Walks for ALS are so important. My wish is that current research will soon provide for early detection and a treatment to slow or stop progression and hopefully someday provide a cure for ALS.
My journey started a few years back with slowly increasing difficulty walking up hills and stairs, loss of balance, stumbling and falling. It’s old age they said! Eventually my doctor decided these weren’t normal and sent me to a couple of neurologists who performed a number of tests with the end result being Dr. Kalra identifying my condition was ALS. Those words threw my family and me into shock.
Immediately a meeting was set up with the ALS team at the University of Alberta/Kaye Edmonton Clinic who shared with us what to expect and how to care for me. We meet regularly with this wonderful group to check my status and advise on actions if necessary. They referred me to the ALS Society who have been beyond words in providing equipment to assist with my mobility issues , personal support and providing a link to the health care systems in Edmonton and Hinton. The Society’s monthly coffee parties provided my husband Jim and me a chance to meet other patients in various stages of the disease and share day to day helpful hints. We plan to stay in touch via Skype.
When my Hinton family, Kim and Ryan Tew, heard of my diagnosis, they wanted to be part of my journey and aid Jim in my care as needed. Together we purchased the Bar-F Ranch House and we moved in June 2017. This has meant that the burden of care has been spread out and we have had some special family times.
We have become familiar with the Hinton Health Care system and have had a very positive experience,meeting knowledgeable and caring practitioners. My Case Manager in Hinton has been very responsive and made many suggestions that have really helped.
Although ALS has taken away my mobility and ability to do things, I try to keep this adventure as positive as I can, enjoying my family and friends and the beautiful scenery of Hinton and Jasper."
Thank you for sharing your story with us, Helen and we will see you all at the Hinton WALK for ALS!
The ALS Society of Alberta is proud to present its 2017 report to the community. Thank you to everyone who contributed to the ALS cause throughout 2017. It is because of this incredible community that we are able to work toward our mission of making each day the best possible day for people living with and affected by ALS.
When it comes to testing new therapeutic approaches for ALS, researchers have a wide variety of animal models to choose from. However, many drugs that have been shown to be effective in animal models have failed in human clinical trials, leading to the question: which animal models are the most effective for modeling human disease? In this webinar, Dr. Vincent Picher-Martel from Laval University will present some advantages and disadvantages of the animal models currently available for the study of ALS. He will also discuss his work using mice models to simulate mutations in Ubiquilin-2 and TDP-43, two genes known to contribute to the development of ALS.
On our last day of our #MakingitPossible stories we spoke to Colleen Kovaluk who lives with ALS. Colleen was diagnosed with ALS in December 2015 and has been attending the Edmonton coffee group with her husband, Peter.
"We love coming to the ALS coffee shop because of the great treats they provide. Yummy!" Colleen is known at coffee group for providing a warm welcome to new members with open arms.
Colleen's family members are also very active with the ALS community, her sister Melanie who lives in Lethbridge attends the Lethbridge WALK yearly. Her niece Nicole who got married last September made donations to the ALS Society in lieu of party favours at her wedding in Calgary.
Colleen and Peter also love spending time with their friendly dog, Kona who is just as warm and pleasant as his owners. Thank you Colleen and Peter for being such a bright presence at each month's coffee group.
The Board of Directors of the ALS Society of Alberta is an incredible group of volunteers that generously give their time and expertise to guide our Society and the work we do.
They are people that have personally been touched by ALS so they know the depth and intensity of this disease. Tara Pentney, Cathy Martin, Gord Banting, Heather Haddow, Paul Leroux, Dave Williams, Rochelle Maitripala and Nancy Lyzaniwski. They are all #MakingitPossible every day.
This year, we would also like to thank and congratulate Jan Desrosiers for an incredible 15 years on our Board. Thank you for all that you have done and the difference you made during your time on the Board.
Behind the scenes, they each dedicate countless hours to the work we do, attend numerous events each year and lead our organization with passion and commitment.
Thank you to all of you. We are so very lucky.
The ALS Society of Alberta is proud to support those affected by PLS and Kennedy's Disease. Today, Corey Kjorsvik is helping to raise awareness about Kennedy's and how he keeps #MakingitPossible to attend support groups in both Calgary and Edmonton.
"In 2002 I was diagnosed with Kennedy’s Disease (Spinal Bulbar Muscular Atrophy) at the age of 39. It is a rare genetic neuromuscular disease that affects about 1 in 40,000 people worldwide. It is a slow wasting of the muscle mass with no cure. Going back to 1997, I was feeling signs of weakness in my arms and trouble walking long distances. A couple really bad choking fits made me realize that something was not right and that I needed to see a doctor about it. It has been misdiagnosed in the past as ALS, and I can still remember vividly the thoughts going through my head at the time I was being tested, and what my future would hold.
As my symptoms progress the ALS Society has become such a blessing to me. They have taken me under their wings and given me so much support. I have always had the love and support from my family and friends but was never able to find that outlet where I could communicate and share freely with others the same issues, symptoms, feelings that I was going through. It was while attending the ALS clinic in Calgary’s SHC for the first time that made me aware of the fact that I was being surrounded by so much support, and that I needed to stay involved.
Now as I move forward, I attend their monthly support group meetings in both Calgary and Edmonton. I look so forward to these meetings. The atmosphere is that of understanding, support, and caring, in such a positive environment. Being able to share with others my own personal knowledge and obstacles and understanding their own, I believe helps to better all of us in moving forward. The ALS Societies lending program has also been so helpful in helping me overcome the obstacles I encounter with mobility. I have now completed my second annual Betty’s Run for ALS in Calgary and am overwhelmed by the outpouring of people that attend in support of their loved ones and friends. Our team The “Kennedy’s Clan was able to raise over $1100.00 this year.
Being able to reach out and tell your story, I believe is so important in getting the word out about ALS and looking for that cure. Research I understand through the ALS Society is really progressing right now and hopefully in the process, they will stumble upon and find a cure for Kennedy’s Disease. To everyone that suffers from this terrible disease of ALS, and to those that work and volunteer tirelessly in support of the ALS Society, I say to you all that for who you are and what you do, 'you do truly make a difference in everyone’s life'"
Today we are celebrating John Tuckwell and his Tuckwell’s Travellers Team in the Edmonton WALK for ALS. John’s family is incredible committed to #MakingitPossible to attend the WALK each year, and do an exceptional job fundraising. In 2016, the Tuckwell Travellers were the first-ever recipient of the James H. Brown Edmonton WALK for ALS Team Challenge, raising $46,495!
John’s sister, Cathy, travels from Toronto to attend the WALK, and his parents, Linda and Paul travel from BC.
Thank you to this incredible group of fundraisers for coming together each year to honour John, and to channel hope for a future without ALS
On day 26 of ALS Awarness Month, we wanted to honour Fred Gillis who lived with ALS and was our Edmonton WALK Ambassador in 2017. Fred's wife, Lana wanted to share a few words about Fred and his #MakingItPossible story.
"Fred's commitment was passionate and strong, he was all about finding a cure, he knew it was too late for him, but didn't want it to be too late for others. Fred was still able to participate in research trials, even though we moved to another province. He was all in, and didn't want ALS to win...and in his mind he won!"
Team Gillis made it to the top 10 fundraisers in Ontario and family members supported his team in our Edmonton Walk.
Lana continues to stay connected to the ALS Society.
"Everyone is so supportive of each other, this never ends and will always be the way it is. Death ends a life, but not a relationship. I only have two words to describe the ALS Society, love and support."
Thank you Lana, for sharing with us.
Today we wanted to highlight some of our amazing volunteers for day 25 of ALS Awareness Month. Marcie & Melanie Pruden and Nicole Tymchak coordinated the first ever Drayton Valley WALK on June 16 and it raised over $20,000! Thank you ladies for #MakingItPossible for our clients and everyone who has been affected with ALS.
"We were introduced to the ALS Society of Alberta in January of 2015 when our mom, Audrey Pruden, was first diagnosed with ALS. We had no idea what ALS was or what to expect with it, let alone that there was a Society and what it did for people. We soon learned firsthand what the support of the ALS Society was all about! At Mom’s second appointment we were given a transfer wheelchair, through the ALS Society’s Equipment Loan Program, just in case we went somewhere with a lot of walking and Mom got tired. By our third appointment, just 3 short months later, we were dependent on that chair for any length of walking.
Once everyday tasks started to become a struggle for Mom, and a struggle for us trying to help her, the Society stepped in and supplied us with whatever we needed to make it possible for Mom to comfortably continue to do what she loved. At the drop of a hat, the Society had whatever equipment we needed on our door step and made sure Mom was happy and comfortable with it. Without the ALS Society we know that we would not have been able to have Mom at home for nearly as long as we did, which was where she wanted to be for as long as possible. We honestly don’t know how we would have made it possible for Mom to have all of the amazing days that she did without the physical and emotional support from the ALS Society.
We first heard about The WALKs for ALS in the summer of 2015 and talked about attending one with Mom. We fortunately were busy living as much life as we could live with her that summer and missed the opportunity.
We lost our mom in April 2016. Walking in her honour, we attended the Edmonton WALK for ALS in 2017. It was then that we decided we needed to bring this WALK to our hometown of Drayton Valley to help spread awareness for the horrible disease and build a support system in our community for anyone living with and affected by ALS.
The three of us (Melanie and Marcie Pruden and Nicole Tymchak, best friend of Marcie’s for over 20 years and known as the third daughter) attended a WALK training session in October 2017, and then we were on our way.
Being only 29 – 31 years old, the three of us have taken on something that most people our age would not. However, we are doing this to honour Audrey’s legacy and to help raise funds for the ALS Society and ALS research so that both can continue doing the amazing things they do. This is how we can give back to the ALS Society of Alberta to express our eternal gratitude to them.
We held our first annual WALK in Drayton Valley on June 16, 2018 and we look forward to organizing the event for many years to come."
On day 22 of ALS Awareness Month, we talked to Lori Rock whose husband, Bob Rock lived with ALS. Lori shares Bob's #MakingItPossiblestory.
"I can recall the day, September 29, 2014 - almost to the minute - that Bob was diagnosed with ALS. In fact, he wasn’t even in the room when the doctor (neurologist) said to me, “this is bad, this is very, very bad”…this, after a quick handshake and checking Bob’s hands. After a brief check-up of Bob’s limbs, he came back to the room and said, “your husband has ALS”. The world stopped, and my heart shattered…and Bob didn’t even know yet.
In hindsight I would say we were perhaps one of the “lucky” ones, if there is such a thing when it comes to this disease. A very astute chiropractor recognized the symptoms when Bob went to see her because he was having trouble with his hands…she quickly eliminated any back issues and sent a letter to our family doctor who had a neurologist appointment booked for us immediately. Chiropractor, MRI, CT Scan to neurologist and diagnosis within just over a month. When I say we were lucky, it is because we knew so quickly the nature of the beast we were dealing with, without months or even years of visits to various doctors before the diagnosis could be made. When asked one time if he was angry about getting the disease, his quick response was “Nope - what good would that do? Anger takes energy, and I have no energy to waste”. There were lots of emotions, but anger wasn’t one that was allowed in. He was onto count his blessings, and look for the good, 1/2 full glass, rather than 1/2 empty!
Bob was a strong man, and although ALS eventually robbed him of the many things he loved to do - golf, horseback riding, even putzing in his shop, he faced each day with a smile and participated in these activities until he absolutely could not...even getting onto his scooter and heading to the shop when he was supposed to be resting! His strength kept us all strong - our two kids and their spouses, and our four beautiful grandchildren. As his breathing worsened, his speech worsened and his limbs deteriorated, they were the light on some very dark days. Never one to wallow, Bob took the news and faced the disease head on, with no false expectations or false hope. His life motto was you had to play the hand you’re dealt…and wow, what a hand. But our life went on, only now with a certainty looming ahead, not just a someday. Again, perhaps we were a little lucky because we were able to make plans for the future. And plan we did – he picked his final songs and readings and knew exactly who was going to do what at his final celebration.
But there was much to do before that day came, and all were made easier or in some cases, possible, due to the generosity of the ALS Society – a family trip to Hawaii, family reunions, two full winter seasons in Arizona and much time spent with our family and large extended family who tend to rally at any occasion, but most especially in a time of need. We had ramps built, toilets changed out, trees chopped, out-buildings sided, lawns mowed, flowerbeds tended, meals prepared, windows cleaned, horses and fences looked after, quiet moments of visiting and reminiscing, snuggling a baby…there was something for everyone.
The ALS Society…what can I say – they were one step ahead of us all the way, anticipating our needs and providing any type of equipment or gadget we might possibly need – bi-pap, lift chair, bath lift, stair lift…the list goes on. We will be forever indebted to them for their generosity and the quiet and gentle support they provided us. Even the ALS Society of Arizona was kind enough to help us out during the winter months. The disease knows no borders, and thus the societies seemingly have no borders!
As Bob's legacy lives on his memory will be kept alive and we will continue to help the society in anyway we can. In Bob's memory, we've held two memorial golf tournaments in Arizona, with number three in the works and all proceeds are donated to the ALS Society; a beautiful niece and her husband turned the traditional "bride and groom kiss" into an ALS fundraiser; and family members continue to participate in ALS walks in Barrhead, Edmonton and Kamloops , proudly sporting Bob's Boys, Beauties and Babes t-shirts.
Our prayer, at the onset, was that Bob's good days be many, and his bad days be few. In many ways this prayer was answered due so much to the support we received from the ALS Society, and the love and support of family and friends. Our prayer now is that a cure will be found for this beast - ALS.
Sadly, we have indeed learned, 'the last good-bye is the hardest one to say'."
Thank you Lori, for sharing this beautiful story.
It was a fantastic morning on Saturday, June 23rd at the Camrose WALK for ALS! Over $16,000 was raised for client support services and research. Thank you to all who attended this incredible event.