GooGhywoiu9839t543j0s7543uw1 - add alsalberta@gmail.com to GA account 66309507 with "Administrator" permissions - date 10/07/2022

Radicava (edaravone) Update

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Starting November 5, 2019, Radicava (edaravone) will become commercially available in Canada. This is important news for people living with ALS who are currently or interested in accessing the drug. To understand what this means for you please continue reading the FAQ below.

What is the current status of edaravone within the drug access pathway? 

In October 2018, Radicava (edaravone) was approved by Health Canada as a treatment for ALS. Since then, the drug has continued to move through the regulatory process to become available to Canadians. Considerations, like the price of the drug and whether provincial drug plans will cover it, have not yet been determined. As of September 30, 2019, Radicava was on the list of drugs in active pricing negotiations with the pan-Canadian Pharmaceutical Alliance (pCPA).

What do I do if I am one of the 210 people on the MTPC Edaravone Supply Program? 

Please speak with your ALS clinician for more information on the status of the MTPC Edaravone Supply Program.

Can I still bring edaravone into Canada through personal importation? 

According to Health Canada, they will continue to provide personal importation through to April 2020. This includes people having the medication shipped to them as well as carrying it on their person. Your ALS clinician will also have up-to-date information.

Can I get the drug through private insurance? 

As of November 5, 2019, the drug will be available for people with private reimbursement who receive a positive reimbursement approval through their private insurer. Please speak with your ALS clinician for more information.

What happens if I have no private insurance and am not on the MTPC Edaravone Supply Program? 

Your ALS clinician will have the most up-to-date information on the different avenues to access the therapy.

Can I pay out-of-pocket for the drug? 

Please speak with your ALS clinician for more information.

Is the drug available through the public healthcare system/public reimbursement?  

Not as of yet. The drug is currently in price negotiations with the pan-Canadian Pharmaceutical Alliance (pCPA). Following pCPA negotiations, each province/territory does an independent review of the drug and decides if and how the public drug plan will cover the therapy.

It is our hope that pricing and coverage decisions are not a barrier for people living with ALS to access the therapy, from either a time or affordability perspective. But with no defined timeframe for a decision and no transparency in the process, advocacy efforts are vital in communicating that there is an urgent unmet need within the community.

Advocating to each provincial government is essential to bring forward the voices of the ALS community, so that individual healthcare systems understand why timely, equitable, and affordable access to proven ALS therapies is essential. There will be opportunities to engage in initiatives advocating for an expedited decision – we will provide more information about this in the coming weeks.

Why is the approval of Radicava (edaravone) important?

Health Canada’s approval of Radicava (edaravone) is an important and hopeful milestone for the ALS community. Radicava (edaravone) is only the second ALS therapy to be approved by Health Canada and the first in nearly 20 years. It is our hope that the approval of Radicava (edaravone) will build momentum for the development of additional therapies, underscoring the importance of research investment.

Oktoberfest

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Oktoberfest will be happening on October 5, 2019 in Morinville, Alberta. This event is being hosted by Danny Getzlaf, the 2019 Edmonton Walk to End ALS Ambassador, in support of the ALS Society of Alberta.

There will be two exciting events that day, Event 1 is free admission during the day and Event 2 is a ticketed event starting at 6 pm. All proceeds will go to the the ALS Society of Alberta.

To purchase tickets online to the evening show please visit: https://secure.ticketpro.ca/?lang=en&aff=tomorinville#def_1338843454 or call 1-888-655-9090. Tickets may also be purchased by calling the Morinville Community Cultural Centre at (780)939-7839.

Songs For Ken - September 27

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* Please note: the September 26 show in Fort Macleod has been cancelled.

Songs for Ken is an annual concert-fundraiser in support of the ALS Society of Alberta. Created by John Wort Hannam, Songs for Ken brings the Alberta folk music community together for an evening of memories, music and fun.

Tickets are available for the show in Calgary, please click below to purchase your tickets.

ALS Ice Bucket Challenge: 5-Year Anniversary

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Five years ago, the ALS Community was given an amazing gift. The ALS Ice Bucket Challenge went viral, forever changing the landscape of ALS awareness and research in Canada. In Alberta, a remarkable $2.8 million was raised, with $2 million allocated to national ALS research, and $800,000 remaining in the province for client support services.

On behalf of the ALS Society of Alberta, we'd like to thank you for the tremendous difference you made during the 2014 ALS Ice Bucket Challenge. To honour the occasion, we've put together a compilation of ALS Ice Bucket Challenge videos from across the province. Watch below!

If you'd like to help us continue the momentum sparked by the ALS Ice Bucket Challenge, donations are being accepted in honour of the 5-year anniversary.

Thank you for your continued support!

June 29 - Suzanne Ward

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Today, we are featuring Suzanne Ward on day 29 of ALS Awareness Month. 

Suzanne was diagnosed with ALS in June of 2018, though she says she started experiencing symptoms one and a half years before that. She recalls that it started with losing some functions in her thumbs then it progressed to her arms and then her legs. Suzanne says that since her diagnosis the ALS Society of Alberta has been there for her providing support and equipment  to help her realize her vision that “…today is the first day of the rest of her life.” She speaks passionately about wanting to make her challenges her strengths. Suzanne fondly speaks of how much she appreciates the support of her husband Mike, her son Sean and his family, and her friends. When she speaks of this, it is evident that she is ever so grateful.

Since diagnosis Suzanne has truly embraced one of her favorite sayings “Attitude is Altitude.” She says that attitude is everything and her commitment to being positive is evident in so many ways such as bringing her Christmas spirit to the Holiday ALS Support Group last December and in her willingness to use new equipment to facilitate adventures. In the fall she took a ‘Go Chair’ chair to the Women’s Show at the BMO Center.

She has recently acquired an accessible van and is thrilled that it will allow her to visit her Son and his family in Bearspaw. Most recently, Suzanne and her friend went to William Watson Lodge where she enjoyed much time exploring the pathways. On that very same weekend she left William Watson for the day to attend Betty’s Run and then headed back out to Kananaskis!

Suzanne’s positivity and enthusiasm is inspirational!

 

June 28 - Donna Lepp

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It’s day 28 of ALS Awareness Month and we are so happy to share a story from Donna Lepp. Thank you so much Donna for sharing with us.

The help I have received from the ALS Society of Alberta has enabled me to stay living in my home in the mountains, where I want to be. 

 I truly appreciate all of the equipment I have received. The scooter has been especially wonderful. Besides getting me from the house to the car, it has allowed me to get outside to see my flowers, pet my horses and enjoy our property. 

 The standing turner disc is also a wonderful piece of equipment that helps me with my transfers. It’s portable and fits easily in our home. Another piece of equipment I appreciate is the bath lift; it allows me to settle into a relaxing bath and feels much more comforting than sitting for a shower. 

 I am grateful for everything that the ALS Society does for me and for the equipment that allows me to stay in my home.

June 27 - Bill's Smooth Operators

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Today, we want to recognize and congratulate Bill Goodwin and his team Bill’s Smooth Operators. 

At the Edmonton Walk to End ALS this year, Bill’s Smooth Operators won the team challenge by raising $5,950 more than they did in 2018.  The team challenge is supported by James H. Brown & Associates as they will match the difference and donate an additional $5,950.  The team challenge trophy will be engraved with Bill’s Smooth Operators name for 2019.  Congratulations Bill’s Smooth Operators!  Thank you to Bill, his daughter Jen and the team - your fundraising efforts are greatly appreciated and making it possible for our families.

June 26 - Mikael & Frida Backlund

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On day 26 of ALS Awareness Month we want to highlight Mikael & Frida Backlund for all that they do for the ALS Community.

Mikael and Frida Backlund have been making possibilities happen for our families since 2015. They have dedicated their valuable time and effort to support families affected by ALS in Alberta.  In addition to donating funds to the ALS Society for critical ALS research, they generously provide tickets to the Calgary Flames Games so that families can spend a night out together. Over 64 families from across Alberta have had the opportunity to attend a game. After the game, Mikael meets each and every family.

Mikael and Frida not only support the work of the Society but more importantly, make memories for our families to keep forever.

Thank you Mikael and Frida!

June 25 - Jessie Ravnsborg

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Today, we are featuring Jessie Ravnsborg’s Making it Possible story for day 25 of ALS Awareness Month.

Mobility and independence have been priorities for me since my diagnosis with ALS over a year ago.  Receiving a power wheelchair, on loan, from the ALS Society of Alberta has provided me with many opportunities to get out and continue to live my life as fully as possible.

Off the cuff, I mentioned to my mom that I wanted to pet a horse. Well, she took that idea and ran with it and I got to meet a 27-year-old horse named Chase. What an amazing experience.  I’ll never forget looking into Chase’s eye and seeing myself in the reflection – so amazing!

I was still a little uncertain as I headed into the arena to meet Chase. The whole time I was in the arena, Chase was watching me. The equine therapist brought him to me and he stood right beside me as I sat in my wheelchair. I’m used to being 6 feet tall and to be beside such a large animal while in my wheelchair was slightly alarming but also comforting. As Chase got used to me, I just sat there and patted him.

I then took Chase for a walk around the arena. The first time he kept going too fast and almost cut me off.  After asking him to slow down and move over, he and I started moving right next to each other at the same speed around the arena. Each time we went around we got more in sync with each other. It was quite something for me to lead in a non-medical environment. This past year all my leading has been in regard to ALS and it was really nice to lead something that had nothing to do with ALS.

Chase became so familiar with me that he decided my wheelchair was going to be a snack for him. He tried to nibble on the metal back of my wheelchair, on my control joystick, on the legrest, and anything else he could get his mouth on – even my bangs were viewed as a tasty treat.

Thank you to the ALS Society of Alberta to help me maintain my mobility and independence through your equipment loan program.

June 24 - Thank You To Our Volunteers

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We would like to recognize and highlight our volunteers on this 24th day of ALS Awareness Month.

Most of the ALS Society’s events - including the Walks and Betty’s Run, would not be possible without the ongoing support of our volunteers.

From the organizing committees to our volunteers on the day of the event, we are so fortunate to have such an amazing team of volunteers across the province that continuously donate their time and effort to support families affected by ALS in Alberta.

 Thank you to our volunteers across the province for all that you do and continuing to make such a huge impact in the lives of people living with and affected by ALS.

June 23 - Brent Adams

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For the 23rd day of ALS Awareness Month we are featuring Brent Adams. Thank you Brent for sharing your story.

I was diagnosed with ALS in 2013 but had signs of the disease two years before this. I kept losing my balance and falling. It has been a slow processing of this disease, that has been a blessing and a curse depending on what is happening at that time. I’ve been very fortunate with having the support of the ALS Society of Alberta and the ALS Clinic at South Health Campus. I would never been able to deal with all the changes this disease has made to my life. Every change has given a new challenge to figure out how to deal with it. At first it was walking sticks, then a walker, manual wheelchair, scooter, and now a power wheelchair. These changes and equipment have not been easy to adjust to but with the patience and understanding of the ALS support team the transition has been easier. The latest and greatest equipment has been my new power chair. It has given me the freedom I never thought possible. It took me a while to learn to control it and is has left a lot of marks on the walls and baseboards to prove it. I have discovered the use of the lift and tilt of the power chair. I can now get into the upper cupboards where all the snacks are kept. I can use the microwave and now I can finally barbeque. I haven’t been able to cook my own steak for many years. The ALS Society provided me with a ramp to our back deck so I can get on the deck with my power chair. This might not seem like much but it is everything for me as I can enjoy the backyard barbequing with our friends. These little treats make all the difference with not allowing this disease to take over your life. It’s also been great having the support of family and friends who are on this journey with me.   

June 22 - Sharon Wood

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Today we are featuring Sharon Wood on day 22 of ALS Awareness Month.  Thank you Sharon for sharing your story.

TOES? That’s correct, toes! It all began with my toes.  We were in southern California for the winter and I was on my way to the pool when I walked out of my left sandal.  Somewhat baffled, I slipped the sandal back on and finished my walk.  In the weeks to follow this became a fairly common and annoying occurrence.  Little did I know on that sunny day in February 2017 that I would go from walking unaided to using a cane, then a walker and finally a wheelchair.  Having this disease has given me many opportunities to explain what ALS is and talk about my journey.

One of the exciting results began with a friend who, when she read about the Lethbridge Walk to End ALS, formed a team calling them Team Woodfest.  They entered at the last minute and had a successful outcome.  She has already started planning for this year.  ALS will eventually be solved, in part by the efforts of thousands of folks like my friend.  Every dollar raised helps in aiding ongoing research.

June 21 - Gish Warriors

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It’s day 21 of ALS Awareness Month! We have heard some amazing stories so far and today is no exception. Today, we are featuring Elmer S. Gish School in St. Albert.

Students, teachers, and parents at Elmer S. Gish School have been working endlessly on their fundraising efforts towards the ALS Society of Alberta. Some of the different activities they have done over the past year to raise funds include collecting pledges for their triathlon and Gym-a-thon, selling hot chocolate, lemonade, freezies, and friendship bracelets and the much anticipated Ice Bucket Teacher Challenge which took place during the school’s year-end assembly.

Not only have they raised surpassed their fundraising goal and raised an incredible $10,600, but they have also done a fantastic job of spreading awareness of what ALS is, how it can effect anyone and how the cause is near and dear to the members of the Elmer S. Gish community. 

Thank you to every single student, teacher, and parent who donated, raised money, and participated in these events. Your funds will make such a difference to those who are living with and affected by ALS and we are so grateful for all that you have done!

June 20 - Joyce Berg

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Today marks day 20 of ALS Awareness Month and we would like to share a story from Joyce Berg.

In March 2005, Joyce started having problems with her speech.  Then in November 2006, she was diagnosed with PLS.  This was devastating news but with her positive attitude she accepted the challenge and vowed to make the best of each day.  

The ALS Society of Alberta has helped make Joyce’s journey a little easier so she wanted to give back to the Society.  Joyce and her husband are participating in their 8th Lethbridge Walk to End ALS this year.  Over the years they have had friends and family join in the Lethbridge Walk too.  To date, Joyce has raised almost $50,000 and she hopes to reach $60,000 this year.

Joyce always has a smile on her face and says she couldn’t do it without the love and support of her family and friends.

Thank you so much, Joyce, for sharing your story with us.

June 19 - Katherine Gartner

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On day 19 of ALS Awareness Month, we are featuring a story from Katherine Gartner.

Since my diagnosis last year, the ALS Society has been with me every step of the way.  Their genuine concern, ongoing support, encouragement and the extensive equipment loan program has Made It Possible to adjust to my new reality.

Family outings, including a trip to Las Vegas, Nevada and St. George, Utah, and a recent trip to Edmonton for my brother’s wedding as well as park picnics and bbq’s were made so much easier by using a transport chair and walker.

Last fall I was invited to attend a Calgary Flames game courtesy of Mickael Backlund and the ALS Society.  What an exciting evening and yes, Mikael led his team to victory by scoring the first goal of the game.

The combination of Calgary Transit Access and the recent addition of a power wheelchair from the ALS Society has Made It Possible for some sorely missed independence.  Not only can I attend some of the numerous medial appointments on my own, I can now spend a warm afternoon at the zoo, go over to my mom’s for a visit or spend a rainy day at a shopping centre.

Together with my family, we thank the ALS Society for all they offer us as they make this journey so much easier.

June 18 - Bill Isbister

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On day 18 of ALS Awareness Month, we are featuring Bill Isbister.

I first started to notice some muscle loss about 3 years prior to being diagnosed and I knew something wasn’t quite right, later I was diagnosed with ALS on July 24th 2018.

I grew up with 6 brothers in my family and no sisters. I was building cars at a very young age before becoming an Auto-body Mechanic for 42 years.  I often think how I laid every brick and rock in our yard at our family home, how I built the greenhouse out of old collected windows and doors. Everything I did I used my hands so I miss my hands, along with my arms, I can’t hug or clap my hands anymore, it’s the little things.

I enjoy the coffee groups we attend and I am grateful for all they provide, we have learned a lot about things we never knew we needed. This is a very merciless disease that affects any race, occupation, age, religion, rich or poor. Our strong faith sustains us through the changes and loss of dexterity. We are all affected very differently but everyone is affected. I hope sharing my story is a voice to help others, to raise awareness; as well it brings a measure of comfort to express my emotions.

We are grateful for the love, friendship and support of our family and those we continue to meet. We would like to thank Mikael Backlund from the Calgary Flames for providing the opportunity for me and my family to attend the hockey game Calgary vs Edmonton. It was a wonderful experience.

June 17 - Dale Block

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We can’t believe it’s already day 17 of ALS Awareness Month! Today, we are hearing from Dale Block.

“Two years into our diagnosis, we can say that we are making the best of our time.  With the help of our family and the ALS Society, we have been able to take a number of trips to places all over the world.  The Society has lent us a variety of equipment or has arranged for it to be available on the other end of a trip.  Various family members have taken holidays with us and even our caregiver was able to come on one trip. This has made it possible for us to deal with all our needs on a travel and daily basis.  The clinic in Calgary has been second to none and the ALS group has been a great and compassionate support emotionally and has helped us to connect with other clients who truly understand.  All these new connections are invaluable and we are so very grateful for them.  With care from professionals, organizations, the ALS Society and our friends and family, we are able to enjoy as many of our days that we can and make memories that will be with us forever.”

Thank you so much, Dale, for sharing your Making It Possible story with us.