Prairie to Peak

ALS Society of Alberta Spring Newsletter, April 2023


Registration is Open!

Walk Together for ALS

Registration is open for the 2023 Walk Together for ALS events across Alberta!


So far, we have nine communities in Alberta participating. Please visit our website for location details and more information.



The Alberta Walk Together for ALS is the only event by Albertans for Albertans, supporting those living with ALS across the province. Register or donate today!

Register

Betty's Run for ALS

Registration is now open for the 2023 Betty's Run for ALS! Participants can choose between a 5 km walk, or an 8 km timed run.


For 27 years, Betty's Run has been inspiring care, hope, and community for those living with and affected by ALS.


We look forward to seeing you at 9 am in North Glenmore Park on Sunday, June 11!

Register

ALS Society Equipment Video

We are thrilled to announce the release of our latest video, showcasing the details of our Equipment Loan Program. The video highlights the individualized support the program provides for those living with and affected by ALS while giving center stage to the warehouse and specialized equipment.

 

We would like to extend a heartfelt thank you to volunteer, Ryan Caughey who filmed and edited the video for us. His dedication and hard work made this video possible, and we’re grateful for his contribution to the ALS Society!

ALS Community News

First ALS Western Canada Conference February 10-11, 2023 

The Alberta Health Services ALS Clinic and the University of Calgary Neuroscience Department hosted the first Western Canadian ALS Conference in Banff in February. We were honored to be invited to be a part of this visionary event. The overarching goals of the day were to build relationships and connections, foster collaboration and create space for innovation. Clinicians, researchers, allied healthcare professionals, and administrators came together to strengthen relationships, make new connections, and come up with innovative ways to support families affected by ALS. This inspirational event brought experts in ALS together from across Western Canada. Thank you to Lara Osterreicher, Dr. Theodore Mobach, and Dr. Lawrence Korngut for their dedicated work in bringing the ALS Community together!

Our Guardian Angels by Frida Backlund

Frida Backlund has been involved with the ALS Society of Alberta since she first moved to Calgary in 2014. She has remained passionate about supporting the ALS cause, as she lost her mom to ALS when she was just 19 years old. In addition to the amazing work Frida does to support the ALS community, she recently released her first book, Our Guardian Angels. She wrote this book to offer readers comfort and an explanation for where to seek our loved ones when we can no longer see their faces or hear their voices. Guiding and protecting us, Frida teaches little ones that while some of our most cherished people may be gone, they haven’t left us; after all, they are our guardian angels. She hopes it can provide comfort and be a tool for families as

they navigate grief.

Click the link below to hear Frida share more about Our Guardian Angels, and her personal story, in an interview with the Calgary Flames TV.

Watch

ALS Climb for a Cure

At the end of January, Albertan Chris Clarke, alongside three close friends, climbed Mount Kilimanjaro (Africa’s highest summit) in honour of his late father, Aussie, who lived with ALS. Aussie resided in Edmonton and was supported by the ALS Society of Alberta after his diagnosis in July 2021. Chris raised nearly $25,000 - with 50 per cent of proceeds donated to the ALS Society of Alberta! We congratulate Chirs on his amazing accomplishment and thank him for his support.

Read More

A Night out for Rob


A Night Out for Rob was held on March 25 at the Edmonton Clansman Rugby Club. This event brought close friends and family together to celebrate and show their support for Rob McCaffrey, who lives with ALS.


There were refreshments, socializing, and incredible live music, something that Rob loves! This event raised nearly $7,000 for the ALS Society of Alberta. Thank you to everyone who donated and attended the event!

Thank You Mikael and Frida Backlund!

Mikael and Frida tirelessly support the Calgary community. They have been true leaders in making our community a better place. They support so many important causes and truly make a difference in the lives of those living with and affected by ALS.


The ALS community is incredibly thankful for their support. Mikael and Frida host events, support families in Alberta, fund groundbreaking research, generate awareness, and host our families from across Alberta at the Calgary Flames games.


The highlight of attending the Calgary Flames games is always when Mikael meets the family at the end of the game. Now with reduced COVID restrictions, these games have brought our families back together and provided the opportunity to meet Mikael in person. Mikael and Frida have hosted more than 90 families since 2014!



Thank you for making a difference.

Congratulations, Howie Sniderman


Congratulations to Howie Sniderman for receiving the Pro Bono Legal Service award at the 2023 Distinguished Service Awards hosted by the Canadian Bar Association and Law Society of Alberta. Howie has been a long-time supporter of the ALS cause. His good friend and partner at Witten Law lived with ALS.



Howie was recognized for his contributions to many organizations. Edmonton’s Jewish community, United Synagogue of Conservative Judaism, the Hebrew University of Jerusalem, B’nai B’rith Society, just to name a few. His dedicated contribution to the ALS Society of Alberta is in memory of his dear friend lost to ALS.

Thank You F12!


The ALS Society of Alberta would like to extend a big thank you to F12, who presented us with a generous donation of over $6,000.


Leslie Ring-Adams accepted the check on behalf of the Society. We appreciate F12 for their generous donation!

Thank You Calgary Foundation

We would like to extend our appreciation to the Calgary Foundation for its support. In the winter of 2022, the Calgary Foundation provided the ALS Society of Alberta with a Community Grant. This grant was used to support changes in our donation management systems. We are very grateful for this opportunity!

ALS Research News

The Canadian Neuromuscular Disease Registry (CNDR) is actively recruiting all individuals diagnosed with ALS.


The CNDR is a national registry partnering with ALS clinics across the country that strives to improve access to care and therapies for people with ALS and to increase the impacts of research in the Canadian healthcare system. The CNDR works with the community to provide essential clinical data related to people living with ALS for research and planning of future studies. 

 

The CNDR is recruiting individuals using or using Edaravone or Albrioza (formerly AMX0035). The CNDR is collaborating with clinicians, scientists, patient organizations, and industry on studies to evaluate the safety, tolerability, and effectiveness of ALS therapies to support access to drugs for Canadians who may benefit. 

Learn More

The Comprehensive Analysis Platform to Understand, Remedy and Eliminate ALS (CAPTURE ALS)


CAPTURE ALS, led by Dr. Sanjay Kalra at the University of Alberta, is a national ALS research platform that is developing the world’s most detailed and comprehensive picture of ALS. People living with ALS and related diseases, as well as healthy controls, are invited to participate in this observational study at the University of Alberta and tell their own unique stories through their data. The data captured, including MRI scans, neurological exams, patient-reported outcome measures, cognitive and speech testing, as well as blood – will be shared with scientists across the globe to better understand ALS and to develop more effective treatments and biomarkers. Recruitment is ongoing at 4 ALS centers across Canada, including in Edmonton, where the first CAPTURE ALS participant was enrolled. To learn more, email [email protected]

The University of Alberta ALS Intervention Trials


The University of Alberta is looking for participants for the upcoming ALS Interventional Trails.


CY5031 Reldesemtiv Phase 3 - Participants aged between 18 and 80.

 

AP101-02 - A Study to evaluate, safety, tolerability, pharmacodynamic (PD) markers, and pharmacokinetics (PK) of AP-101 in participants with ALS.

 

COMBAT-ALS (ibudilast) - Evaluation of MN-166 (Ibudilast) for 12 months followed by an open-label extension for six months in patients with ALS.

 

SAR443820 - Phase 2 Phase 2 study for SAR443820 in participants with ALS.

Learn More

How to Donate

If you would like to help us make each day the best possible day for those living with and affected by ALS, there are many impactful ways to give. Donations now, more than ever, will make a tremendous impact on our ability to support our families in Alberta. Please click the link below to help our families today with one-time, monthly, or in-memoriam donations. Please call us to discuss other giving options. Thank you!

Donate Today

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