June 13 - Barry Varga

Barry Varga could always bring a smile out of anyone. With the support of his family and friends, and Barry’s amazing outlook on life, Barry continued to live each day with determination, passion and humour. Barry decided he had to do something that would bring some laughter and humour at such a dark time and raise awareness about ALS.

With Judy and the girls by his side, and along with his best friends, Mike & Candace, the film, Disabled and Dangerous was made. This is the outcome of Barry’s hilarious perspective coupled with his ambition to bring people together to make a comedy project that will raise awareness and funds for ALS.

The film was premiered at Calgary's Globe Cinema in June 2012 with more than 200 people in attendance.  Disabled and Dangerous has played at various public and private fundraisers. This short film has won the hearts of audiences in several American Film Festivals, including the New York City Iron Mule Short Comedy Film Series.

Barry’s spirit, amazing, positive outlook, lives on. #MakingitPossible

June 12 - Ashley de Nooij

Today we are celebrating one of our most dedicated volunteers, Ashley de Nooij. Ashley has attended every Betty's Run for ALS since the very beginning 21 years ago. She also stepped up and joined the committee in 2014, and has been working hard ever since. She takes on more responsibility each year, with a smile and a can-do attitude. She never hesitates to commit her time to the ALS Society and we could not be more grateful to have her on board. Thank you Ashley for #MakingitPossible year, after year, after year.

June 10 - Mandy Van Dresar

It is day 10 of ALS Awareness Month, and we are attending the Grande Prairie WALK for ALS to celebrate! WALK Coordinator, Mandy Van Dresar, has worked tirelessly to promote ALS awareness in her city. Before the WALK took place, it had already raised nearly $30,000 for client support services and research. Thank you to Mandy Van Dresar, her friends and family, for #MakingitPossible to host a WALK for ALS in Grande Prairie. We know it has not been easy, and your commitment is inspiring.

Click here to read Mandy's story. 

June 9 - John Wort Hannam

In 2012, John Wort Hannam’s childhood friend, Ken passed away from ALS. In honour of Ken, John has brought his musician friends and family to pay tribute to a wonderful friend. This year, John hosted the third Annual Songs for Ken concerts in Calgary and Fort Macleod.  It is truly a celebration of friendship, life and dedication to all of the families affected by ALS. Incredibly, John has raised over $27,000 for the ALS cause. 

In the midst of his busy life, John takes precious time to support the ALS cause.  He has become a true ambassador to make a difference in the lives of people affected by ALS. Thank you to John, Jenny and Charlie for all you do for people living with ALS. #MakingitPossible.

See a song he wrote in honour of Ken, below. 

June 8 - John Richardson

It is day eight of ALS Awareness Month, and today we are sharing a story from John Richardson, who took advantage of the Slide and Ride program at COP. John was able to enjoy a day of skiing with his family, thanks to the equipment and support provided. Thank you to COP for this amazing program, and for #MakingitPossible to make each day the best possible day for those living with and affected by ALS!

"I had a great time on the snow Sunday at COP. I would recommend it everyone. They provided everything you need, including sit ski, lift ticket, lunch voucher, and helmet if needed. I was assigned two guides to control speed and avoid others. If interested people can go to the CADS Alberta website and look for Slide & Ride program." - John & Joyce Richardson

June 7 - Roy Eklund

Can you believe it is already day seven of ALS Awareness Month?! Today we are sharing Roy Eklund's story, who is living with Kennedy's Disease (a neuromuscular disorder with similar symptoms to ALS). 

"My name is Roy Eklund and I was diagnosed with Kennedys Disease in 1991. I appreciate the sheepskin slippers provided to me from the ALS Society. They are a blessing, I wear them all the time and it is so nice to actually have warm feet! I have a better sleep now that I have a blanket lifter to avoid pressure on my toes. "I call it my toe tent" In addition, I love my spokeman. People can actually hear me talking in the dining room. Socializing and connecting with others is very important to me. I look forward to attending the monthly MND coffee group at the ALS Society. It is an up lifter an encouragement and so great to talk to people and meet with others who are going through the same thing as me. Thank you to the ALS Society for all you have provided and all your support, you are a blessing!"

June 6 - Doug Janzen

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It's day six of ALS Awareness Month, and today we are sharing how the ALS Society of Alberta is #MakingitPossible for Doug Janzen. When asked about his favourite piece of equipment, he struggled to decide. It started with the air mattress for his hospital bed, as it has alternating pressures and settings, allowing him to rest comfortably and without pain. Then he added the EZ lift chair saying he has spent so much time in it, even at one point sleeping at night in the chair! And THEN he added the power wheelchair. He and his wife, Rita, continued to list all of the equipment in their house that has allowed them to maintain Doug's independence and to support his care. This photo is of him in his Doug's Defender's hat, which is currently the top fundraising team for the 2017 Betty's Run for ALS! Thank you for your commitment, Doug and Rita!

Red Deer Paint Nite for ALS!

Thank you to everyone who joined us on Sunday for the Red Deer Paint Nite for ALS! Over 40 guests attended to attempt a cornflower and daisy painting, and an additional $100 was raised through the 50/50! Thank you to Michelle Parker and Deborah Hansen for your continued volunteer efforts in Red Deer. We will see you all at the WALK on June 17!

June 5 - Fred Gillis

It's day five of ALS Awareness Month, and today we are celebrating our 2017 Edmonton WALK for ALS Ambassador, Fred Gillis! Fred has been a law enforcement officer with the RCMP for the past 29 years, and has worked in various locations across Canada. This morning, he joined the Global Edmonton morning show to share his story, and invited the community to the WALK for ALS on Saturday in Hawrelak Park! Fred, his family, friends and coworkers continue #MakingitPossible to raise a tremendous amount of funds and awareness for ALS!

Click here to watch Fred's interview!

“Hello, my name is Fred Gillis and this year I am honoured to be the ALS Society of Alberta Ambassador for the Edmonton WALK for ALS on June 10, 2017. I am a law enforcement officer with the RCMP and for the past 29 years I have worked in various locations across Canada. I am but one of the “Many Faces of ALS”. On December 1, 2015, I was diagnosed with ALS. I had been losing my arm strength and coordination for almost a year. It was devastating news and acceptance was difficult because you learn right away that ALS affects everyone around you; your family, your friends and your career. We immediately began to focus on the way forward which included education, communication, support and physical therapy. Since my diagnosis I have been getting support and assistance from the University of Alberta ALS Multidisciplinary Clinic team, the ALS Society of Alberta and the ALS Edmonton Society Support Group. ALS continually makes me adapt to the progression of the disease and I cannot stress enough how grateful I am to be able to pick up the phone and have someone understand my situation and help me come up with solutions to make living easier. I have only two words to describe the ALS Society of Alberta – love and support. Most of this support and assistance would not exist if it were not for the generous financial support by Canadians. I am taking part in two ALS clinical research trials, one of which is spearheaded by Dr. Sanjay Kalra, co-medical director of the Alberta Health Services’ ALS Clinic in Edmonton. Dr. Kalra and his research team are using Magnetic Resonance Imaging (MRI) technology to study and learn about changes in the brains of people with ALS and to track the progression of the disease in hopes of developing a better way to detect and ultimately cure ALS. ALS research gives me hope that we will one day find a cure. This is all about Canadians helping Canadians. I sincerely hope everyone will come out and support the 2017 Edmonton WALK for ALS!" - Fred Gillis

June 4 - Jody Pfeifer

Today is day four of ALS Awareness Month, and we are celebrating the wonderful commitment that Jody Pfiefer has to spreading awareness in her community. Jody agreed to be the 2017 Betty's Run for ALS Ambassador to show the public what it is like to live with the disease. This morning, she joined Global Calgary to share why she decided to be the Ambassador, and to spread the word about Betty's Run. Jody will also share her story on Country 105 tomorrow.

Click here to see her interview on Global Calgary. 

 

"Hans Christian Andersen said, “Just living is not enough. One must have sunshine, freedom and a little flower.” This little quote struck me as being so special and meaningful 15 years ago when I first discovered it. Going through papers and getting organized a month ago, it was rediscovered and this little saying took on a whole new special meaning to me.

My name is Jody Pfeifer. On August 3, 2016, I was diagnosed with ALS. Someone asked me, “Why you?” I responded “Why not me? This disease does not discriminate. If not me then someone else would be getting the diagnosis. It just as easily could have been you. The selection is purely random.” Now I am the face of ALS.

I have lived a full life of fantastic adventures and memories. Having grown up in Vancouver, I was active for most of my life playing team sports, racquet sports, on track teams, jogging and doing lots of skiing. Right out of high school I worked for a brokerage firm for ten years. When the firm was taken over in 1989, I moved to Calgary and never looked back. Little did I know I was about to experience the biggest adventure of my life! My son Ryan was born in 1992 and as a single parent still working in the brokerage business, I bought my first house in 1995. The purchase of that house ended up being the best trade I ever made! I still own that little house to this day and my son is living in it at the age of 24. My two greatest accomplishments have become one!

Although the majority of my family lives west of the Rockies, I have tons of “family” in Calgary. The people I’ve met and friends I have made over the years are considered family. These incredible people have shared their lives and homes with my son and I. They’ve been generous with their love and selfless with their caring and time. I love everyone in “my family” very much and it is this group of people who are now a part of my latest journey.

Having been fiercely independent my whole life, I’ve gone from being able to do/fix anything (tools included) to not being able to use an elastic or open a Ziploc bag. With each ongoing muscle twitch I think of the paralyzing, insidious dark journey this disease is taking through my body and wonder about what I won’t be able to do tomorrow? We all have to go sometime; it’s just a matter of when and how……

For the most part I’m staying positive, thankful for having so many incredible people in my life and having the gift of time to tie up loose ends. I’ve discovered that the littlest things have so much more meaning now - a little flower, dogs playing, fresh air and the warmth of the sun. One must have freedom, yes, but one must also have the freedom of their bodies to move to continue to take you on more adventures…..

Just being alive in your life isn’t enough. LIVE your life because none of us knows if someday all you will have left is the memories of a life well lived….."

- Jody Pfeifer, 2017 Ambassador for Betty’s Run for ALS

June 3 - Mary Lou Poscente

It's day three of ALS Awareness month, and we'd like to share a heartfelt testimonial from Mary Lou Poscente, sharing how the Equipment Loan Program has added hours to her day! Porch lifts are #MakingitPossible for those affected by ALS to get in and out of their homes while preserving precious energy. Thank you for your kind words, Mary Lou!

"With profound gratitude, I would like to acknowledge our ALS Society, and in particular, Client Services Coordinator, Rob Lognon. At every approaching and and daunting challenge this disease has presented, the ALS Society has preceded me and made the transitions easier. Grab bars, walkers, AF Orthotics, transfer and shower chairs, and, not the least, a porch lift. Incredibly, this amazing aid has lengthened my days by at least two hours. Thank you from the bottom of my fasciculations." - Mary Lou Poscente

June 2 - Henri Jubinville

For day two of ALS Awareness Month, we are celebrating our 2017 Cold Lake WALK Ambassador, Henri Jubinville. Henri selflessly offered to act as this year's ambassador, to show the public what it is like to live with the disease. Tomorrow marks the 2017 Cold Lake WALK for ALS and we are honoured to celebrate the lives of those affected by ALS in the community. Henri is #MakingitPossible to spread further awareness in the Cold Lake area. From the bottom of our hearts, thank you Henri. Read his story below. 

"I have been living with ALS for many years, but nobody could tell me what it was that I have. I
had spasms all over my body; I was losing strength and had noticeable muscle loss. Over a 7-year span, I had six joint replacements. They told me I had severe osteoarthritis. I worked hard as a heavy duty mechanic, which I think was hard on my body. I loved to work and help people by fixing things. Loretta, my wife, and I took many trips to the city to see neuromuscular specialists. We would see a medical team of doctors, nurses, speech therapists, dieticians, and the ALS Society. Each would speak to us separately and concluded that it was ALS deteriorating my body. That was hard to learn. Now that we have accepted it, we are thankful for the care and support that is given to us. The ALS Society provided me with a breathing machine which helps me sleep better and feel refreshed throughout the day. I also received an easy lift electric chair and other equipment. All of this support is thanks to all who participate in the WALK for ALS and help people like me. Thank you again!" - Henri Jubinville

June 1 - The Thom Family

Today is day one of ALS Awareness month, and we will be sharing a story each day from our amazing ALS community. We will begin with Gerard, Shelley and Adam Thom, an incredible family from Lethbridge. They generously agreed to show the community how equipment can help in some of life's greatest moments, such as watching your son play hockey. We are proud to premiere our 2017 #MakingitPossible PSA, and send all of our love and gratitude to the Thom family in Lethbridge!

Second Annual Zumbathon for ALS!

Wow! The second annual Zumbathon for ALS was an amazing success! The hard work of Lisa Kempton, Cory Davison, their families and friends truly paid off as over 80 dancers took to the floor to "kick some ALS". Over $2,400 was raised through this event, which will make a significant impact in the Alberta ALS community. 
 

 

ALS Colouring Book

We are thrilled that Cara-Lee has completed her very own adult colouring book! She is a true example of #MakingitPossible while living with ALS, and has never let it stop her from doing what she loves. Cara-Lee is selling her colouring books for $20, with partial proceeds donated to the ALS Society of Alberta. If you would like to purchase a book, please contact christyrg@alsab.ca. Congratulations Cara-Lee! A special thank you to Doppler Printing Signs & Labels for donating your print services to make this project possible.

Meet the 2017 Cold Lake WALK for ALS Ambassador, Henri Jubinville

"I have been living with ALS for many years, but nobody could tell me what it was that I have. I
had spasms all over my body; I was losing strength and had noticeable muscle loss. Over a 7-year span, I had six joint replacements. They told me I had severe osteoarthritis. I worked hard as a heavy duty mechanic, which I think was hard on my body. I loved to work and help people by fixing things. Loretta, my wife, and I took many trips to the city to see neuromuscular specialists. We would see a medical team of doctors, nurses, speech therapists, dieticians, and the ALS Society. Each would speak to us separately and concluded that it was ALS deteriorating my body. That was hard to learn. Now that we have accepted it, we are thankful for the care and support that is given to us. The ALS Society provided me with a breathing machine which helps me sleep better and feel refreshed throughout the day. I also received an easy lift electric chair and other equipment. All of this support is thanks to all who participate in the WALK for ALS and help people like me. Thank you again!" - Henri Jubinville

Meet the 2017 Camrose WALK for ALS Ambassador, Henri Unverricht

"Without the ALS Society, I wouldn't have been able to stay at home as long as I could. It's always done on a family level. We are one big family - personal connection with the people, both family and staff. My sleep quality is very good with the bi-pap; it helped right off the bat. The moral and physical support is exceptional as well as support for the family. In the summer of 2015 I experienced shortness of breath and in May of 2016 I was diagnosed with ALS. I lived in Camrose with my wife Violet since 1993 until 2004. In 2004, we moved to Edmonton, then back to Camrose in 2012 where my wife was born and raised. I was born in Lausanne, Switzerland." - Henri Unverricht

Community support helps the ALS Society purchase equipment van

The ALS Society of Alberta was honoured to present its new equipment transport van, made possible by Co-op Home Health Care, the Calgary Old Time Hockey Players Association, and other generous supporters. The equipment van allows the Society to better respond to the rapidly changing needs of those affected by ALS by delivering equipment quickly and efficiently.

Thank you to Rob Naf (Co-op Home Health Care), Jim Feeney and Gerry Braunberger (Calgary Old Time Hockey Players Association) and the ALS Society Board Chair, Jan Desrosiers, for attending today’s van presentation. The support in the Alberta ALS community is extraordinary.

Introducing the 2017 Red Deer WALK for ALS Ambassador, Donna Strome

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"Walking into the Neurologist’s clinic hoping to hear there was a solution to whatever was causing my symptoms and walking out with a diagnosis of ALS, was definitely not how I had expected that day to go. Even though I was a practicing Registered Nurse, and had worked on a palliative care unit helping others dealing with a terminal diagnosis, I felt totally unprepared to hear one applied to me. I am blessed to have supportive family and friends, and am thankful for a belief that in spite of the storms, I have much for which to give thanks. However, the reality of the situation and the gravity of the diagnosis of ALS did cause me angst. I had many questions and concerns about not only the quantity, but quality of my life over the next few years. The ALS Society quickly became another anchor in the storm. The Society, from Administrators to technicians to liaisons to volunteers and peers, have provided much needed and greatly appreciated support. “You are not alone; we are here to help” – words spoken to me during my first visit with the ALS Society. They were not empty words; the Society has played a vital role in navigating with me through the maze of needs and have provided not only moral and emotional support but many practical physical devices to assist my activities of daily living. I cannot thank them enough for the difference they are making in my life!" - Donna Strome