June 10 - Adam Rombough

Today, on day 10 of ALS Awareness Month, we wanted to take some time to share a video and honour our 2018 Edmonton Walk Ambassador, Adam Rombough. Adam’s “A-Bomb” team broke fundraising records and inspired the community to come together to channel home for a future without this disease. This video captures Adam’s Making it Possible story and the inspiring outlook he had.

Thank you so much to the Rombough family for continuing to carry Adam’s legacy and to Hoopla Media for creating this remarkable way to tell Adam’s story.

Link to video: https://www.youtube.com/watch?v=uqtr1bbRNfQ&feature=youtu.be

June 9 - Ken McIsaac

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On day nine of ALS Awareness Month we are featuring Ken McIsaac, our Betty’s Run Ambassador and his Making it Possible story.

“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.”

June 8 - Danny Getzlaf Community Spirit

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On day 8 of ALS Awareness Month, we are so excited to be kicking off Walk season with the @2019 Edmonton Walk to End ALS!

We are featuring Danny Getzlaf, the Edmonton Walk Ambassador and his team Community Spirit. Danny Getzlaf has spearheaded some incredible contributions to ALS awareness and fundraising in Morinville and beyond. Danny hosted a number of initiatives in support of the Edmonton Walk for ALS, including button sales, BBQs, raffles, silent auctions, media interviews, meat draws and more. Danny’s team has already raised an incredible $37,000 for the 2018 Edmonton Walk and hopes to raise $40,000 for this year’s goal!

The Society would like to extend its sincerest thanks to Danny, his wife Linda, and all of their family and friends!

We hope to see you out at Hawrelak Park today at 9 a.m. for the 19th Annual Edmonton Walk to End ALS!

June 7 - PLS & Kennedy's Group

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Today on day 7 of #MakingItPossible, we are featuring the Calgary PLS & Kennedy’s group. This support group has been around for 15+ years and the group is always fun, sharing so much wisdom and of course, laughter.

 

Here are some comments from the members of the group:

 

Corey  - “Once a month I come to spend time with a very special group of people! This group of people that even through their own adversities are able to resonate a sense of understanding, compassion, love, and acceptance in such a positive, uplifting, and safe environment,” he says.  “The group is something that I look so forward to being a part of. This group of people, truly makes a difference in my world, and all that they touch. Thank you to the ALS Society for bringing us together. Life is a journey, not a destination.”

 

Karen – “Support and understanding from this group helps keep me grounded.”

 

Willie & Sylvia – “The support group meetings are so uplifting and it’s good to know someone has our backs.” “Thank you so much to the ALS Society of Alberta for the walker, it is so helpful in the morning.”

 

Thank you everyone for sharing your thoughts and comments with us for this Making it Possible story.

June 6 - Gail Rauw

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Today we are featuring the inspiring story of Gail Rauw on day 6 of of ALS Awareness Month.

My name is Gail and this is how my story about living with ALS started. I first noticed slurred speech in the fall of 2017. I kept hoping it would disappear but it slowly progressed until I decided to take it up with my GP in June 2018. By July 20, 2018 I was told that I definitely “met the criteria for a diagnosis of ALS”. On an ironic note, I spent 30 years in a research laboratory at the U of A studying brain neurochemistry so I knew exactly where I was headed. With the support of my family, we started to roll with the punches and get on with living. We hurried up and did some travelling while I was still mobile with trips to Japan and California in 2018. In March of this year my two daughters organized a surprise trip to Maui for a vow renewal. Maui has always been one of my favourite holiday destinations and my family often heard me say that I would like to renew my vows on the beach. Twenty nine family and friends travelled to Maui for the special day. We made some great memories. My family and friends have been most supportive. My husband drives me to my Radicava infusions (although I can still drive myself). He has worked the casino fundraiser and will be doing the Edmonton Walk to End ALS with my daughter and granddaughter. My other daughter comes from Victoria for every clinic visit. For her 6th birthday party, my granddaughter asked for donations to the ALS Society instead of birthday presents. and raised over $600! I am fortunate to have the ALS clinic at the U of A. With the help of their speech pathologist and ICAN at the Glenrose, I have banked my speech as well as done some message banking for the future. The ALS Society downloaded the speech app I need to my iPad and I am ready to go when my voice is gone. The ALS Society is a blessing! They have helped me navigate the brutal waters of an ALS diagnosis and focus on what I can do and not on what I can’t!

June 5 - Patricia Latremouille

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Wow! It’s already day 5 of ALS Awareness Month. Today we are featuring Patricia Latremouille.

Patricia was initially diagnosed with PLS in 2013 but in 2014 her diagnosis changed to ALS. Patricia’s message to others living with ALS is “It’s possible to live your life”. Her message is one of creating possibilities, which fits so well into our #MakingItPossible campaign.  Patricia wants others living with ALS to know that it’s possible to continue to have new experiences and find ways to cope and adapt as ALS progresses.

Patricia stays active in the community by regularly travelling across the city to her daughter’s home to spend a day a week with her grandchildren and uses Access Calgary services to make these trips along with other outings in the city. When her family visits from the UK, day trips to the Calgary Zoo, the Calgary Stampede, and Banff Hot Springs have all been on the itinerary! Just a few weeks ago Patricia went camping with her husband and friends in Radium which included a visit to Radium Hot Springs.

She says, for her, having the right equipment such as a power wheelchair makes the change in function less noticeable because it enables her to continue to have new experiences with family and friends.  Patricia regularly attends events supporting the ALS community such as the ALS Support Group and Betty’s Run. She always brings her genuine interest in others, her belief in possibilities, and her smile!

Thank you Patricia, for sharing your experience with us!

June 4 - Sylvia Tensfeldt

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On day four of ALS Awareness Month, Sylvia Tensfeldt shares her inspiration with us.

“Receiving a diagnosis of ALS in any of its many forms has a devastating effect on anyone and everyone in their family.  Suffering its effects each day is much like a death by a thousand cuts.  Each day or week you notice yet another activity, which you have so long enjoyed, has been taken from you.  Without the support of family and the ALS Society, this would be so much worse.  The Society has been instrumental in ensuring that I, and many others, can continue to reside in our homes and lead a somewhat independent life.

                The support of the Society and its members has also shown me that there are talents that have been silenced or taken which I think should be honoured.  Before my limited artistic talents are taken from me, I want to produce something that could perhaps provide the Society with much needed support to continue their good work and to also honour talent that I saw in other members. 

                I am therefore taking the opportunity to highlight a photo taken by a member that resonated with me.  I have designed an embroidery project that I hope to complete by late fall which represents the feeling that while our physical abilities may be silenced, the spirit can still soar.  In return, I hope that people will support the Society by sponsoring this project with pledges.  The entire picture contains approximately 40,000 stitches and my goal is to raise at least $1 per stitch.  There is a link attached where you could pledge amounts to your ability (i.e. 1 cent per ten stitches ($40.00).   Once completed, I will auction the framed work to encourage further funds.  Please help me achieve my goal for project I have called “The Spirit Still Soars”.”

For more information and to donate to Sylvia’s project, click here:  https://www.alsab.ca/news/2019/5/30/stitchin-for-support

 

Thank You Mechanical Contractors Association of Canada

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We are thrilled to announce the Mechanical Contractors Association of Canada (MCAC) has chosen The ALS Society of Alberta as the charity of choice this year.

The Society was chosen in honour of MCAC Past President, David Flamand’s sister Patsy Brooks. To read a message from the family of Patsy Brooks please visit mcac.ca/about/charity/.

We thank the MCAC for choosing the ALS Society to help make each day the best possible day for those living with and affected by ALS.

June 3 - Flawrence Szymanski

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On this third day of Making it Possible - A quote from Flawrence Szymanski.

“It’s hard when you are told you have ALS. I still do my count cross stitch, ceramics, and stain glass. You have to take it one day at a time. I am lucky that I have a great husband, family and friends. I am still able to go for coffee with my friends, go to the movies and play cards. It’s important to do the things you can do.”

June 2 - Belle Dezutter

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My name is Belle and I was diagnosed with ALS March 9, 2018. I was not surprised at the news because ALS has taken the life of my 2 brothers and my niece has been diagnosed with ALS two years ago. I felt a sense of relief after the diagnosis because now I could move forward with my life and take on the challenges and new experiences in this new chapter of living. I decided from that day forward I was going to continue living my life with courage and a smile so I can see what's around the next curve while trying to maintain a positive outlook even in the event of immobility. Immediately after my diagnosis I went into a phase 1 clinical study for a new drug being tested on study patients with Familial ALS carrying the SOD1 gene. It was conducted at The Montreal Neurological Institute and Hospital under the care of Dr. Angela Genge the director of the ALS clinic at the Neuro. I went to Montreal nine times in the span of eight months and received the trial drug (B11B067). It is through research and clinical trials around the world that someday there will be cure to end this fatal disease. We must prepare ourselves mentally for what we need to do from day to day. We can perform the most command task for the glory of GOD, even in challenging situations. It was important to me to find a great support group because you learn and teach each other and also become friends with fellow people with and without ALS. I found that support with the ALS Society and my team of doctors and professionals at the ALS clinic. With the amazing help and support from the ALS Society I can tell myself "the sky’s the limit" with some readjustments and some limitations in my everyday living. They also show me the true meaning of HOPE (Heart Open Please Enter) because we need people to be there for us to laugh with and to cry with. I now can live each day in what is my new normal on life’s terms. I am a wanderlust and I have a strong desire to wander and travel this beautiful world. And I now travel differently through the use of a wheelchair/walker that conserves my energy and prevents my falling. I know someday this disease will take my breath away physically but "Life is not measured by the number of breaths we take, but by the moments that take our breath away".

Good bye isn't forever, it’s see you later.

June 1 - Dave Williams

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June 1 officially marks the beginning of ALS Awareness Month across Canada.  To honour our incredible community, we will be sharing a story each day from someone living with or affected by ALS.

Upon being diagnosed with ALS, Dave joined the Board of Directors of the Society in 2007 and served as a board member for twelve years. Dave led with wisdom, expertise and compassion. During the most significant growth of our organization, Dave’s leadership was instrumental to the Society. 

 

One of his many achievements was the awareness he brought to the Alberta Government about the ALS cause. He brought the voice from a family perspective to all levels of Government including Ministers from various portfolios.

We are so honoured that Dave dedicated his time and energy in making a difference in the lives of people living with ALS and their families.

We will forever remember the difference Dave made in the ALS community.

Stitchin' for Support

Sylvia Tensfeldt has been living with ALS but hasn’t let that diagnosis prevent her from doing her favourite things - including cross-stitching. This year Sylvia will be designing an embroidery project that she hopes to complete by the fall of this year. The entire picture, partially represented below, contains approximately 40,000 stitches and her goal is to raise at least $1 per stitch.

There is a link attached where you could pledge amounts to your ability (i.e. 1 cent per ten stitches ($40.00) .   Once completed, Sylvia will auction the framed work to encourage further funds.  Please help her achieve her goal for her project she has appropriately called “The Spirit Still Soars”.

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Karen's Purple Shirt Party - Saturday, June 8, 2019

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The 2nd Annual Karen’s Purple Shirt Party is quickly approaching. Come out and celebrate the life of Karen Wagenaar. All proceeds from the event will be donated to the ALS Society of Alberta and will help families living with and affected by ALS.

 Two years have passed since we lost Karen to this devastating disease ALS.  Karen was only 48 years old when she was taken from us.  Her battle was short at only 13 and ½ months.  She left 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. It was to be a time of healing with family and friends; a backyard celebration of Karen’s life. Good food, good friends, good stories, and a time to reminisce. The idea to add fundraiser was a last-minute thought. We raised $ 25,000 that evening and Karen’s Purple Shirt Party was born. This year, we have shifted to a fundraiser event with Karen being the main theme. ALS claimed Karen’s father Glen, 10 years before Karen and just recently, her cousin Jackie was diagnosed with ALS at the age of 54. Our cause and mission are clear. We must do our part in ending and solving the puzzle of ALS.  Our hope in raising money and awareness is to also make sure people living with ALS have the tools and support they need as they live with the ever-increasing challenges ALS brings! The support that our family received from the ALS Society of Alberta was a Godsend!  Our commitment to them to ensure they have the equipment they need is first and foremost in our fundraising.

                Considering this, we would like to invite you to our second annual Karen’s Purple Shirt Party on June 8th. We have expanded our activities to include a 3 on 3 ball hockey tournament. We invite many teams to enter for a fee of $ 100/team.  Karen was a fan of all things hockey so our tournament will be called Karen’s 3 on 3 for ALS! A silent auction including hockey memorabilia but also many other things, will be included. Join us for a complimentary barbeque dinner, enjoy a guest speaker from the ALS Society of Alberta and relax with some wonderful music. It’s our family’s hope to share an evening of great entertainment that is worthy of you attending. All costs associated with our event are paid for by Karen’s Legacy Fund so that 100 % of the money raised can go to ALS. We only ask that you donate at the event, enter a team in Karen’s 3 on 3 for ALS, or donate on-line through ALS Society of Alberta. Come out on June 8th and spend an evening with our family, good friends, and new friends. Join us in finding a cure for this disease. The medical community says they are as close as 20-25 years from cracking the code on ALS. We must believe and have hope that they are right.

Wear something purple in honor of Karen.

The event is free to attend, please RSVP https://www.eventbrite.ca/e/karens-purple-shirt-party-tickets-60709359328?fbclid=IwAR3Ww0CmybVjjTZou2sldDHuHfVKE3oYI9kQJA4VHJNEhHhD416meGbqTQg

For more event details please check out the Karen’s Purple Shirt Party Facebook page https://www.facebook.com/pg/purpleshirtparty/events/?ref=page_internal

2019 Hinton Walk to End ALS Ambassador: Ken Rusk

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.

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 “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.”

 

 


 

2019 Edmonton Walk to End ALS Kick-off Brunch

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!

Introducing the 2019 Edmonton Walk to End ALS Ambassador, Danny Getzlaf

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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.

2019 Betty's Run for ALS Ambassador: Ken McIsaac

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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.”