Connect T ALS MB N

FALL 2018

will, making a bequest, or a gift of annuities, MESSAGE insurance and more. Speaking to a financial advisor can be very helpful. Long term planning FROM can help you and also assist you in fulfilling your own personal wishes, as well as leaving a Executive legacy. The ALS Society of Manitoba supports clients Director and families living with ALS/MND and will always strive to advocate for quality client care, more Welcome to fall – where did the summer go!!!!! research and to enhance quality of life. We need your help, and that is why we need to have more In this issue you will note the enormous knowledge about the hard questions around contributions so many of you have made, thank living with ALS/MND that need to be asked and you to all for your commitment and support. answered. Knowledge is powerful, and we can all learn This issue of Connect reflects the many aspects more about the struggles people have living of how you have helped us – we need your with ALS/MND.Being empowered to advocate help and HOPE that you will join us and be part on issues that help people have a better of the journey to make ALS/MND treatable not quality of life can be a tool for healing, hope terminal. and moving forward. How can we keep this momentum going? What do we need to do? Diana Rasmussen How can we better communicate between Executive Director disciplines and bridge gaps, so that we have meaningful conversations?

We have the opportunity to grow our organization and think about our mission, vision Table of Contents and values and plan accordingly. We have a Research strategic plan; however, we cannot do this Discoveries that may lead to effective treatments alone. on ALS/ 3rd Annual Virtual Research Forum

This is where you come in – you can help Programs & Services by volunteering, serving on a committee, or Give a Boost Program fundraising. Giving back to the community is a valuable experience and can help a small Events organization like ours meet our goals and Cornflower Ball, ALS Awareness Month, Walk for ALS objectives. Coming up: Bud Spud & Steak / September 28th We often get asked, how can I give back. As Third-Party Events mentioned, there are the tangible day to day An easy way to get involved and help things that can help, but you can also become a monthly donor or think about a planned gift. Connect to the als/mnd Community This can be done through designating the ALS Get to know who is at the forefront of our organization Society of Manitoba as a beneficiary in your

www.ALSMB.ca Connect Connect Discoveries that may He was the New York ALS RESEARCH PROGRAMS & UPCOMING EVENTS RECENT EVENTS Yankees’ first baseman lead to effective SERVICES playing in a then-record 2,130 treatments on ALS consecutive games and Client Input on Belmont and South leading The Yankees to win Give a BOOST Manitoba Walk for ALS A Night of Fun, Friends the World Series six times Radicava ALS/MND research is Program Saturday September 8, 2018 & Mystery during his 17 years in the team having an unprecedented Starting Location: Club Room, before he was diagnosed (edaravone) momentum. Different avenues In partnership with Home Belmont, MB The Cornflower Ball with ALS/MND. It was on The Canadian Agency for Drugs are being developed as Instead Senior Care, this is Check-In: 9:30 am July 4, 1939 at the Yankees never before by the research a year-round program that celebrated on April 21st was and Technologies in Health Start: 10:30 am / Distance: 5K a fun and memorable night Stadium, when Gehrig gave (CADTH) recently posted an community trying to better collects nutritional supplement Support this event by the greatest speech in sports understand the disease, its drinks. for all, with a mystery about open call for patient input on participating, donating or Jessica’s jewel. It was a sold- history. Radicava (edaravone), a drug evolution and its causes to The Give a Boost Program creating your own Virtual Walk. find more effective treatments asks people to donate six- out event in a revamped which is under the approval and Donations open until September themed atmosphere that To commemorate those affordability pathway review by for the near future. pack Boost, Ensure and other 15, 2018 at: www.walkforals.ca/ famous words and spread To know more about where supplement drinks to help raised over $65,000 to Health Canada. find-a-walk/manitoba support equipment, programs awareness on ALS in our we are at, we recommend you clients to get the nutrition they community, the review the periodical updates need. and services for our clients In response to this CADTH’s call, Manitobans for and families. Goldeyes and the ALS Society ALS Canada, in coordination presented by the ALS Canada Any time is a good time to HumanRights -Torch of of Manitoba partnered to host with their provincial partners, Research Program team, participate and give a boost to Dignity Relay the ALS/Lou Gehrig’s Night. which lastly reported the people living with ALS/MND! At the Victoria Inn Hotel gathered input from the ALS/ Sunday September 23, 2018 and Convention Centre, our On May 26th, more than 30 MND community across the following discoveries: 10 am - Bedson Park volunteers helped with the Donations of any brand of guests were delighted with country. 460 Bedson Street a great dinner, live music, traditional “pass the helmet” • New insights into high-protein supplement 12:30 pm - 4 pm - Free Family and sold tickets for the 50/50 how mutations in the drinks will be appreciated and an incredible cultural Through a survey and numerous event at The Forks. Come performance by enthusiastic draw in a fantastic evening focus groups conducted in protein FUS leads to the since this option is highly and cheer the ALS Society of with the best baseball fans development of ALS demanded from clients. dancers and musicians from French and English, they invited Manitoba team! Learn more: Folklorama. ever! Fall 2018 Canadians affected by ALS/ • A promising lead for www.mhri.ca We need your help right MND to share their experiences, treatment of an inherited now in order to sustain this Our Rainbow and Live Auction perspectives and realities of form of ALS Bud Spud & Steak for ALS program. Please help! as well as our Auction of living with the disease. • What we can learn from Friday September 28, 2018. HOPE gave out amazing Fall 2018 Fall extremely rare ALS New Location: Canad Inns prizes donated by Manitoban We want to thank our ALS/MND reversal cases Drop off locations Destination Centre – artists and businesses. Community for participating in TYC Event Centre this data input; your voice has • Researchers identify a new 1405 St. Matthews Avenue Thank you everybody for been heard. link between two cellular • Home Instead West - 610 *** Family friendly event being a part of the new era processes disrupted in ALS Sherbrook St Auction of HOPE and 50/50 of this signature event. Our Read the final 2018 ALS • Advances in models used Draw. Tickets $25 – Buy your Cornflower Ball Committee Canada CADTH Patient Input to study the biology of • Home Instead East - 104- tickets now at www.alsmb.ca or is already working on a new Submission: www.als.ca ALS 250 Marion Street call (204) 831-1510 Ext. 20 themed experience for next year’s event. Keep tuned into Listen to what Canadian Learn more about the current • London Drugs - St. Vital Lite Up a Life Campaign ALSMB.ca and don’t miss out! researchers say about the ALS Research projects: Mall December 1, 2018 to future of ALS/MND: www.als.ca January 31, 2019 https://youtu.be/4Q_ZVthPJ0s • The Medicine Shoppe Lighting ceremony: ednesday SAVE THE DATE: Pharmacy – 1A - 660 December 12, 2018. Brummitt- Cornflower Ball 2019 Osborne St Feasby ALS House 106 Kirby April 27th Register for Webinar Drive. Learn more: • ALS Society of Manitoba - www.alsmb.ca 3rd Annual Virtual Research 2A - 1717 Dublin Ave Forum. October 17, 2018. ALS/Lou Gehrig’s Night Live presentations from CONTACT US: Canada’s world-class with the Goldeyes ALS research community, ALS Society of Manitoba international ALS researchers 2A-1717 Dublin Avenue Do you know why ALS/MND and experts. Winnipeg, MB R3H 0H2 is also known as Lou Gehrig’s Phone (204) 831-1510 disease? Lou Gehrig passed Free registration at: www.als.ca Toll Free 1-866-718-1642 away from ALS/MND in 1941. [email protected]

Page 2 www.ALSMB.ca www.ALSMB.ca Page 3 Connect Connect June is ALS that volunteer on committees those people and families We thank all those individuals THIRD-PARTY EVENTS and those that dedicate struggling with ALS/MND. THIRD-PARTY and businesses who have (January to August, 2018) Awareness Month countless hours to making sure hosted an event and all our events are successful. Thank you to all walkers, EVENTS fundraised for the ALS Society • BDO Jeans Day Since 2015, June is ALS donors, dignitaries and of Manitoba during the year! • Catfish Buy the Pound Awareness Month in Manitoba. We also gave out the Frank sponsors for their incredible A third-party fundraising event is • Crown Utilities Golf This year, the Winnipeg Sign Edmonds Volunteer Award and support. So far, we have a planned activity organized by Tournament at The Forks was lit up in the Marcel Bertrand Award for raised over $190,000. community groups or individuals If you are interested in • Guy’s Fight Social purple for 24 hours to bring Business Excellence to those to fundraise for a cause or a hosting a fundraising • Henry Derksen Memorial awareness on the disease who have made an outstanding For those who still want to non-profit organization. Golf Tournament help us achieve our goal of activity to help the ALS • International Facility and to acknowledge and pay contribution to the ALS Society Society of Manitoba, call tribute to those living with of Manitoba. $255,000, online donations For the ALS Society of Management Association ALS/MND in the province. will remain open until Manitoba, third-party events (204) 831- 1510 or check Golf Tournament To see this year’s recipients of September 15, 2018. are an important source our Third-Party Event • Pancake Beakfast - As part of the activities of the ALS awards: www.alsmb. for fundraising and a great Guidelines, which will help Dugald, MB ALS Awareness Month, the ca/als-manitoba/awards/ We hope to see you next year philanthropic opportunity for you run your event more • Prairie Dog Central Community at the Walk! people to support and give back smoothly: Railway Relations Bus was wrapped in to our ALS/MND community, no • Robert and Doreen Dick and out with ALS/MND ads to SAVE THE DATE: Winnipeg matter the format or the size. https://alsmb.ca/third- Memorial Ski-a-Thon help spread awareness on the Walk for ALS 2019 / June party-events/ • Vipond Golf Tournament disease around the city. 15th. From corporate events or • Wooly Classic Poker programs to garage sales or Tournament lemonade stands, in-kind or money focused, these events represent an essential support for client services, programs and equipment. Fall 2018 If you are considering organizing an event to raise funds for the ALS Society of Manitoba, here are a few key

Fall 2018 Fall things that might help you to make that fabulous idea come into reality:

• Uncover your own motivations and find your inspiration

• Set your goals. Write your Winnipeg Walk for ALS plan. Include why, what, when, who and how you will achieve Every year, the Winnipeg Walk those objectives AGM / Volunteer for ALS, one of the largest walks in the city, helps support • Evaluate your resources Appreciation Evening people living with ALS/MND and ask for other’s help to in Manitoba as well as invests implement your plan more On June 20th, we hosted in national research to make easily the Annual General Meeting the disease treatable and not terminal. and Volunteer Appreciation • Use your personal social Evening at the Victoria Inn media channels and networks Hotel & Convention Centre. This year’s event was amazing! More than 1,800 to invite people to participate (let everybody know about it!) The evening was an participants gathered at opportunity for the ALS Assiniboine Park to walk Society of Manitoba to thank together, raise money, • Remember to emphasize your all our volunteers; those on bring awareness and, more enthusiasm, goals and ways to our board of directors, those importantly, to share their help to keep people engaged in HOPE for a better future for your campaign

Page 4 www.ALSMB.ca www.ALSMB.ca Page 5 Connect Connect Jessica has no personal worked in many locations. Real meetings, supports the various across the United States. Connect to connection to the ALS Society had the opportunity to work fundraising activities and Family has always been of Manitoba. However, she in Yellowknife, NWT, being an promotes our cause any way and, still is, very important the ALS/MND states, “this organization is Auditor, as well as in various she can. She is also a member to Belinda. “I come from a Community a place where I belong. I am management roles. He has of the Federation Council of family of nine, and when my not just the president but an worked for CIBC for over 38 ALS Societies across Canada mom, Dora, was diagnosed active member working with years and has been a Senior and part of the Advocacy with ALS, we came together Get to know the Board like-minded people”. Business Advisor for the last Committee. as a family and, as a family; 15. we surrounded her with love of Directors The main reason why Jessica Micheline encourages anyone and support as we walked got involved in the Board Real’s connection with the ALS looking to add a new dimension together on the path that led of Directors is because she Society of Manitoba was a to their life, to help educate to her passing in 2013,” she considers the ALS Society coincidence between a family the population about ALS and expresses. of Manitoba is a non-profit story and his work. “As my motor neuron diseases and organization that does more mother passed away in 2004 to give meaningful support With her mom’s diagnosis, for people suffering with ALS/ with a combined diagnosis to the people living with ALS/ she gained an insight as what MND than just fundraising. “I of Dementia and ALS, I have Micheline Chaput MND. Please join the ALS she calls the “challenges and wanted to give my time where always wanted to be able to Vice President Society of Manitoba. “Being barriers” that face people my activities directly affect participate in some way. It was involved with the ALS Society living with ALS. She explains people with ALS/MND right through my role with the bank Micheline was born in St. of Manitoba allows me to “this experience made me here in Manitoba,” she adds. that I connected with the ALS Pierre-Jolys, a small town in support a great cause. I have realize the importance of the Society of Manitoba”. southern Manitoba, but moved met a number of interesting and ALS Society of Manitoba’s To finalize, Jessica urges to Winnipeg in her late teens dedicated people all working support services and the everybody to get involved: He became a board member in to go to university. She worked toward the same goal. It has need for medical staff and “Clients and their families June of 2016, wanting to assist and truly enjoyed working as given me new insight into this caregivers to be educated with ALS/MND need you. We the Society in the finance elementary school teacher disease, educated me on all on the proper treatment and are helping people who live area. Shortly after joining, he for 15 years and as school the research that is being made care for individuals living with JESSICA LORUSSO all over Manitoba, and the became Treasurer. “Within the counsellor for another 15 years to combat ALS/MND and has this disease. With that said, Fall 2018 number of clients is growing. first year, I realized how much of her career. Now retired, given me hope that a cure will before my mom passed away, President ALS/MND is not a sexy more I could become involved she loves the company of her be found,” she highlights. I promised her that I would disease and it is fatal, we need within the Board. It is not only children and grand-children find a way to share our story, Jessica was born in to help our people NOW”. gratifying in knowing you are advocate for those living with Northwestern Ontario in a and enjoys gardening, golfing Fall 2018 Fall helping in some way for a good and bowling. ALS and continue to have small town called Geraldton. cause, but also knowing what hope for a cure”. She believes that growing up a great job the ALS Society of in the north makes a person “While at my last school before Manitoba is doing to provide retirement, I had the wonderful In 2016, Belinda joined the ALS very resilient. Presently, she is support and service to people Society of Manitoba’s Board a Canadian Leading Expert on experience of working with a afflicted with this illness”, Real principal who cared deeply of Directors and, as a board Credibility and Industry Leader explains. member, she has participated Development with 16 years about his students. He fostered a learning environment where in events such as Lite Up a in establishing and growing According to Real Picard Life Campaign, Walk for ALS, businesses to become market the students were expected there are many challenges to learn to their fullest and Cornflower Ball, Ice Bucket leaders. Jessica is one of the and opportunities the Society Challenge, and the Bud Spud twelve civility master trainers be good, kind citizens. faces, “I look forward to my Unfortunately, his career & Steak for ALS. These events in the world, a book author continued involvement as a have given her the opportunity and an award winner. was cut short when he was Board Member and I would diagnosed with ALS/MND,” she to make community encourage others to volunteer explains. connections with families living In addition to her professional in the many activities the with ALS and share stories of endeavours, Jessica has Society has. Everyone has struggles, joy and tears. volunteered for three years for In 2011, having retired and a skill or talent that can be looking for a way to give back Belinda Wiebe Friesen the ALS Society of Manitoba shared to assist someone Board Member “The Society relies on these and has been the President to the community, Micheline REAL PICARD else, as an individual or in a noticed a call for volunteers fundraising events to provide of the Board of Directors group. Volunteering is a great Belinda was born and raised services and, with the help of since 2016. She is also an on our Board of Directors and Treasurer way to discover who you are realized that this would be a in a small village southeast of volunteers and participants, enthusiastic member of the and how you can assist your Altona, Manitoba. Since 2007, they are able to do so. Cornflower Ball Committee. good opportunity to honour Real was raised in Thunder community”. her wonderful principal and to she has worked for Sorenson Therefore, I encourage you to At the Ball, she runs the Bay, Ontario. Graduated Communications as a Video join us. Together we can make registration table and loves help a good cause. with a degree in Business Would you like to become a Relay Service Interpreter (VRS), a difference and together giving a warm welcome to all Administration, he joined the providing communication we can find a cure,” Belinda the attendees. board member? (204) 831 1510 As a member of the Board of banking industry in 1980 and Ext. 20 /[email protected] Directors, she attends monthly services to deaf communities emphasizes.

Page 6 www.ALSMB.ca www.ALSMB.ca Page 7 Connect SPONSORS2018 & SUPPORTERS event sponsors OF THE andALS SOCIETYsupporters OF MANITOBA

KING OF THE MOVERS

3M Canada Credit Union Central of Manitoba Joey Restaurants Oliv Tasting Room Stride Ahead Sports Air Unlimited Crystal Clear Water Johnson Family Olive Garden Super Value Home Services Alan Lacovetsky D Jay’s Ichabod’s Lounge & Patio Johnston Group Oma’s Bake Shop Swiss Chalet Alfies Dan & Eileen Coates Keurig Pamela Brown The Bake Oven Arctic Ice Davids Tea Kite and Kaboodle Panago Pizza – Main St The Keg Steakhouse & Bar De Luca Fine Wines Koch Stainless Products Pancake House The Wine House Betula Lake Denny’s Restaurant Lakeview Hotels & Resorts Papa Murphy’s Thunder Rapids Booster Juice Domino’s Pizza Landmark Cinemas 8 Grant Park Pary Grewal Tinkertown Bornhorst Mechanical Inc. Edward Carriere LightVisions Peppercorn Restaurant TJX Canada Boston Pizza - Lionel European Skin Care Plus Lilac Resort Perth’s Tom Carlyle Brandyourland.ca Flo Essence Lisa Scrivens Perogy Planet True North Sports & Entertainment Browns Socialhouse Folklorama Manitoba Museum Prairie Dog Central Railway United Association Local Union 254 Calabria Market & Fine Wines Fort Garry Hotel Manitoba Nurses Union Rae and Jerry’s Steakhouse United Rental Cambrian Credit Union Fukumoto Fitness Manitoba Opera Rainbow Stage VIA Rail Canada Canadian Beverage Container Fun Shots Photo Booth Marigolds Restaurant -Inkster Red Lobster Restaurant Victoria Inn Hotel & Convention Centre Recycling Association Generation Green Mark Sobrevinas Rocco’s Pizzeria VIP Home Care Canadian Brewhouse Genevie Henderson Mastermind Toys Rubber Ducky Resort and Water Mart Carlson Truck Outfitters George Chapman McNally Robinson Campground Western Marble & Tile Ltd. Celebrations Dinner Theatre Grace & Company Midland Appliance World Rumor’s Restaurant WestJet Chatters GRS Financial Services Inc. Milkman Distributors & Comedy Club Wilf’s Elie Ford Sales Ltd. Children’s Museum Gunn’s Bakery Mona Lisa Ristorante Italiano Salisbury House Winnipeg Blue Bombers Clear Spring Ice Harper Media Mongo’s Saucers Café Winnipeg Goldeyes Confusion Corner Bar & Grill Hilary Druxman Moxie’s Bar and Grill Save on Foods WOW! Hospitality Concepts Cookies by George Holiday Inn (Airport West) Nygard Fashion Park Shapes WPS/ Community Relations Cadets Coras Ichiban Japanese Steakhouse Oakley Optical Shooters Golf Course WPS/ Community Relations Division 51 Cottage Bakery JellyFish Float Spa Old Dutch Silver Heights Restaurant Zealous Medi SPA

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