Over 160 people were in attendance yesterday at a private screening of The Avengers: End Game and over $2,000 in donations were made! Thank you to Glen Jarbeau and family for planning such a successful event and everyone who attended!
The 2019 Hinton Walk to End ALS will be on Sunday, June 16 and we are so excited to introduce our Hinton Ambassador this year, Ken Rusk.
“My name is Ken Rusk, and I am honoured to have been asked to be the Ambassador for the Hinton Walk to End ALS on June 16, 2019. I would like to share some of my story with you including how I became afflicted with ALS and my journey with it so far. In late October of 2016, I suffered a deep muscle injury to my left calf. After months of this injury not fully healing, I began to notice a constant twitching in my left thigh. After a couple of more months passed by, I noticed the twitching had moved up the left side of my body and into my left shoulder. I reported the twitching to my doctor and she scheduled me for an MRI. The MRI came back inconclusive and I was left with no definitive answers. Early in the spring of 2017, I was out walking with my daughter and she noticed that my left foot kept slapping down on the ground with each step I took. I simply wrote this off as a result of my calf injury, which had still not healed completely. At a following appointment with my doctor, I told her about my concern and she diagnosed me with drop foot. She then scheduled me to see Dr. Makus, a neurologist at the Hinton General Hospital in November of 2017. After noting the twitching in my left thigh, Dr. Makus asked me if I had ever heard of Lou Gehrig’s disease. He recommended I go for further testing.
Two months later, on January 9, 2018, Dr. Kalra, a neurologist at the Kaye Center in Edmonton, confirmed that I indeed had ALS and immediately put me on permanent disability. Over the course of the next few months, I was able to continue to be fairly active and mobile with the use of my walking sticks and a brace on my left foot. A few months later, I found myself in need of a walker. And finally, in February of 2019, an electric wheelchair became necessary as the disease continued to progress.
Throughout my struggles of the progression of ALS, I have to thank Christy and the ALS Society of Alberta for providing me with the equipment that I have needed to make my life more comfortable. In addition to providing the walking assistance equipment, they have also equipped my home with stair lifts, as well as a wheelchair lift to provide me easier access to and around my home. Without the ALS Society and the support of my family and friends, I could not imagine what life would be like trying to cope with this disease. So I would like to thank everyone for their support and encourage everyone to come join us at the Hinton Walk to End ALS on June 16, 2019 at the Green Square in Hinton to help raise awareness and to support all people affected by ALS.”
We had such an incredible morning at the Edmonton Walk to End ALS Kick-off Brunch on Saturday, March 9. Over 75 people came together to get their fundraising started and to meet this year’s Ambassador, Danny Getzlaf. We heard such inspiring speeches from Danny, Nancy Lyzaniwski, Patti Courchesne, Terri Kezema and Mayor of Morinville, Barry Turner.
Thank you to everyone who joined us, it was a great way to officially kick-off the 2019 Walk season!
My name is Danny Getzlaf and I am honoured to be the 2019 Edmonton Walk Ambassador. I’ve always approached life with zest and excitement. I celebrate each day with my love for my wife Linda, our 6 children, my family and friends, and my great community of Morinville.
In the summer of 2017, I had experienced fatigue at work and found myself coming home to have 2 to 3 hour naps after my work day. Anyone that knows me knows that naps are not a thing I do. At first, I was worried that it was due to a heart condition or possibly diabetes, but it wasn’t. On August 23, 2017, at a routine doctor visit, I told my doctor that I recently was unable to move my right big toe. I wasn’t too concerned, but my Doctor was. He had a neurologist squeeze me in for an appointment at the Sturgeon Hospital within a week. That appointment was followed with an MRI, 2 EMG’s, and a bucket full of blood tests all within a very short period of time. Fast forward to November 20, 2017, when at 51 years old I was diagnosed with ALS - a disease that is always fatal and has no cure. I can’t explain how I felt after receiving the devastating news. I didn’t hesitate to tell my family and friends immediately. There was a lot of “I LOVE YOU’s” and loads of hugs in the following weeks. I continued to work for three months but with regular medical appointments and depleting energy levels, I made the tough decision to go on medical leave.
I began to do a lot of traveling with my wife and camping with my children, family and friends; and focused on developing relationships with friends from the past. I quickly realized what was important in my life.
I was referred to the ALS clinic of Edmonton and had an entire team of health professionals present me with options for the possibility of slowing down the disease progression. I was excited to sign up for research like MRI studies and new or upcoming pharmaceuticals. I’m happy to announce that I was 1 of 12 ALS patients in Edmonton area to start a new drug called Edaravone (Radicava). This is the first drug that’s been released in 24 years to help ALS patients. I started my infusion treatments on January 28th, 2019. It consists of 10 days of infusions and 14 days off, on a 28 day schedule. It’s not a cure but it’s been shown to slow down progression up to 33%. With ongoing research we are hopefully getting closer to find a cure for this deadly disease and I’m proud to be a part of it!
Throughout my journey, the ALS Society of Alberta has been there for me by providing support and keeping me informed of all the medical equipment that I have access to in the future. From mobility aids like walkers, wheelchairs, porch and stair lifts to breathing and communication devices. I am more determined now than ever, to make it known that we are in desperate need of funding and research for this deadly disease. I am requesting that everyone join me in supporting all ALS patients by supporting the ALS Society of Alberta and you can start by committing to participate in the 2019 Edmonton ALS Walk!
The ALS Walk brings family, friends and communities together celebrating the past, present, and the future of ALS. Through the tremendous support of the ALS Clinic, the Society; and support groups I attend, I am able to “Live Each Day with Passion and Pride” in my Community.
Each year, the Betty’s Run for ALS committee selects an Ambassador to help show the public what it is like to live with the disease. The ALS Society of Alberta is proud to present Ken McIsaac as the 2019 Betty’s Run for ALS Ambassador.
“I am honoured to be the Ambassador for the 23rd annual Betty’s Run for ALS and to share my story. As can be typical of ALS, diagnosis can be challenging. In July 2018, I was experiencing shortness of breath and had significant weight loss. I was having painful muscle spasms in my diaphragm and heart palpitations. I spent the next three months with various specialists attempting to make a diagnosis. In mid-October I was scheduled for a stress test that was monitored by an internist. During this test, he observed symptoms that convinced him I had ALS. On November 7, 2018 an EMG conducted by the ALS Clinic at South Health Campus confirmed the diagnosis.
The ALS Clinic has been outstanding. The team there has been very helpful and supportive, and have even worked with me on an alternative drug therapy from Japan that could slow down the progression of the disease and increase my life expectancy. However, there is no cure currently for ALS; all that I can hope for is a delay in the progression. Shortly after being diagnosed our family was introduced to the ALS Society of Alberta in Calgary. We attended a potluck event before Christmas and met several people with ALS. We were so impressed with the positive attitudes of people filled with acceptance and resilience. It was also a reminder of the necessity to provide support and services for those battling ALS.
Receiving the initial diagnosis that day in October and sharing that news with my wife and son were the most gut wrenching and emotional events of our lives. Although I am weak and short of breath, the more prominent debilitating symptoms have yet to manifest themselves. We are blessed with many thoughtful and caring friends.
My family and I look forward to being part of Betty’s Run for ALS this June to help raise funds and awareness for this important cause.”
Paul Downey & Stephanie Williams were part of the Santa Claus Parade last weekend in Fort McMurray giving out Save the Dates for the 2019 Fort Mac WALK for ALS. They did such a fantastic job spreading awareness in the parade with their float! What a great start to the holiday season!
A massive thank you to the Lloydminster Fire Fighter's Association for raising an incredible $24,547 at their 6th Annual Rooftop Camp Out!
The continued support of the ALS Society is a reflection of the tremendous compassion and generosity in the Lloydminster community. Thank you to all who participated and for your continued dedication in making each day the best day possible for those living with ALS.
Nearly 100 people were in attendance yesterday at a private screening of The Grinch. Thank you to Glen Jarbeau and family for creating such a warm and inviting atmosphere for families affected by ALS!
The 9th Annual Judy Schweitzer ALS Curl for a Cure was a success in Red Deer yesterday! Thank you to Carrie Mello for organizing another fantastic event and to everyone who attended!
Congratulations to Payton Moro for not only surpassing her goal of raising over $5000 for her annual Moro Memorial Ride with YYC Cycle - Spin Studio for the ALS Society, but for also being a recipient of the Leader of Tomorrow award last night at our Appreciation Event. Thank you for bringing so much energy and compassion to the ALS cause!
Bring your families and friends to a private screening (no admission) of The Grinch on November 18 at the City Centre Landmark Theatre in Edmonton! RSVP to email@example.com by November 9th.
A special thank you to Wendy Schilling and Frieda Vanherck for donating $1,240 from their pickleball tournament. We are so grateful for your contribution to the Society!
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!