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Connect- Fall 2018 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 Winnipeg 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! 2018 Fall 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 Polo Park – 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.
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