Welcome to the email edition of our newsletter, "Prairie to Peak". Every month we will include a few key stories - let us know if there is something you would like covered in an upcoming issue.
Message from Nancy Lyzaniwski, Board Chair, ALS Society of Alberta
Here are a couple of clichés to get out of the way….
… It has been an unusual year … Unprecedented.… Social distancing … Zoom fatigue.
… Pivoting … The new normal.
And my favourite: … You’re on mute.
Now that I’ve put those out there (for the nth time), I won’t bore you with them again in this message. I will, however, focus on this one… every crisis is an opportunity.
Last year, at the start of the pandemic, the Board of Directors got out of the way. We made governance shifts to ensure Board policies were not unintentionally creating obstacles for the staff to continue to provide programs and services to our families. The team, under Karen Caughey’s leadership, quickly navigated through ever-changing restrictions and so many unknowns about Covid-19 while focusing on keeping our families and staff safe. The work of the Client Services Team evolved into an opportunity to maximize technology that welcomed interaction with clients across the province. Our annual Walk to End ALS, Betty’s Run for ALS and summer events morphed into an opportunity for smaller, creative, and inclusive events across the province that were shared online.
Six months into the pandemic we held our annual board planning sessions and fortuitously, the bi-annual planning day in which we are joined by our dedicated staff. Mike Grogan, www.Integralorg.ca, facilitated a series of sessions where we explored and discussed the impacts of an uncertain and evolving external environment and what strategic implications this might have for the organization. These discussions were beneficial in that staff and Board members had an opportunity to participate in scenario planning, a process where we challenged each other’s assumptions, explored issues, and brainstormed the possible scenarios our organization could face in the future.
As we embark on the second year of the pandemic, the Board is discussing how the pandemic has unintentionally afforded the ALS Society of Alberta an opportunity to continue to change. As the only organization in the province to support people living with and affected by ALS, the Board is focusing on governing in an environment of unknowns. The scenario planning discussions helped us document all possibilities – positive and negative. Not all of the components of those scenarios will become a reality, but we will focus on adapting our governance strategies to embrace the positive changes and address any negative ones.
As I mentioned at the start, this is an opportunity. An opportunity for inclusion – for our already very engaged community to interact through technology as never before. An opportunity for research – advances in treatment for one disease are often the result of research for another disease. An opportunity for adaptation – for our staff to continue to be flexible in changing the way they work to meet restrictions to keep themselves and our families safe. An opportunity for collaboration – to share and learn from other non-profit health service organizations. An opportunity for fundraising innovation – I challenge everyone to be innovative and creative in our summer fundraising events – do something you’ve never done before (in accordance with restrictions at that time)!
Though the pandemic is a world-wide crisis, the ALS Society of Alberta is not in crisis mode. Thanks to our supportive community, to which I am honoured to belong, we will continue to support each other and ensure we take care of our team as we always have – our clients, their caregivers and our staff.
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Registration is now open!!!
The 25th annual Betty's Run for ALS will be held on June 13th, and similar to last year, will be a Virtual Event. Funds raised go toward client support services for people living with ALS in Alberta and to our support of ALS Research. Let's celebrate the 25th anniversary together - register as an individual or a team today! And meet this year's Ambassador, Pete Truch!
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Registration is now open!!!
It's that time of the year again, Walk Season! We are excited to announce the registration for all Walks To End ALS are now OPEN. Funds raised go toward client support services for people living with ALS in Alberta and to support ALS Research. We have many wonderful Ambassadors and will introduce them all - today meet Edmonton's Ambassador Belle DeZutter!
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Lou Gehrig Day - June 2nd
Major League Baseball will celebrate its inaugural "Lou Gehrig Day" on June 2nd, in an effort to commemorate the legacy of the New York Yankees legend, raise money and awareness for ALS charities, and celebrate the groups and individuals who have led the pursuit for cures.
“Major League Baseball is thrilled to celebrate the legacy of Lou Gehrig, whose humility and courage continue to inspire our society," MLB commissioner Rob Manfred said.
Read the full article on Sportsnet Here. And watch on social media for some ways to get involved!
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Research News: Dr. Wendy Johnston Among this Year's Kaye Competition Winners
Congratulations to Dr. Wendy Johnston! In December, 2020, seven Edmonton-based researchers, including Dr. Johnston of the ALS Clinic at the Kaye Edmonton Clinic, received funding to undertake trailblazing medical studies and patient-care programs. The competition, a partnership between the University of Alberta Hospital (UAH), Kaye Edmonton Clinic (KEC) and the University Hospital Foundation, was made possible thanks to a $30-million donation by local philanthropist and retired businessman, Donald Kaye, in 2012.
By monitoring ALS patients over the next year, and working with local doctors, Johnston and her team hope to uncover barriers to diagnosis, and improve those odds. They’ll work in partnership with Alberta’s Physician Learning Program to create an education and information-sharing program for doctors and share their findings with the ALS Societies of Alberta and Canada to get the word out among patients. Between the promise of speedier diagnoses and exciting emerging therapies on the horizon, Johnston says breakthroughs are coming soon for ALS patients. “It’s a hopeful time,” she says.
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Karen's Purple Shirt Party - ALS Selfie Challenge, April 26-30!
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Medicine Hat High School's basketball programs dedicate one home game each year in support of “Karen’s Purple Shirt Party” and the ALS Society of Alberta. This event is in memory of Karen Wagenaar, an amazing wife, mother, friend and supporter of MHHS basketball and the Medicine Hat Christian School. Due to COVID-19, there are no in-person games, and as such the ALS Selfie Challenge was born. Meaghan is showing off the ALS Selfie logo filter here.
The week of April 26, let's flood Instagram with Selfies for the challenge! You can participate as an individual, a school or a company - More details here.
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SAIT Student Silent Auction |
A wonderful group of students from SAIT's Project Management class put together a silent auction earlier this month, complete with a presentation from the ALS Society of Alberta, and a special musical guest. The group raised almost $1,500 on our behalf! Here is Jack Mauro presenting the cheque to Paula Michetti. Other team members were Ivan Dub and Gurtej Waraich. Thank you!! |
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F12 Donation
Our IT company, F12, not only provides us with amazing service - they also donate back to the ALS Society every year! Here is Luis Palasio dropping off a generous cheque at our offices back in February. Thank you Luis and F12!
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It Takes a Village Fundraiser |
Sylvia Tensfeldt has another beautiful project in the works - her "It Takes a Village" cross-stitch piece. To raise funds for the ALS Society, you can become part of the piece by making a donation of $150 or more - for example you could choose a Pet Store or a Bakery, and have your name, business or pet name stitched into the building itself! Learn more here.
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Wayne Thomas's book "Perspectives" documents his journey with ALS, providing thoughtful insights and honest reflection. 70 per cent of the proceeds of his book sales go to the ALS Society of Alberta - purchase your copy here.
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Danny Getzlaf started the Christmas Ice Bucket Challenge in December, and is continuing it throughout 2021 with a goal of raising $25,000! Read more and take a moment to donate here.
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Donation Options
We have added a monthly donation option to our website! If you would like to help us make each day the best possible day for those living with and affected by ALS, monthly donations are an impactful way 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. Thank you.
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