It is with mixed feelings that we share with you that Trina Radford accepted a new position with an environmental science company in Kamloops and left the MS Society of Canada this past June. Trina joined the Society in 2008 as the Manager of the Kamloops & Area Chapter, a position that she held until 2014 when she transitioned into the role of Regional Manager for the Southern Interior Region. As Regional Manager, Trina was an integral member of the BC and Yukon Division Senior Management Team, providing leadership and support to the staff and volunteers in the ar-eas served by the West Kootenay, South Okana-gan, Okanagan and Kamloops & Area Chapters. Trina’s unwavering commitment to the mission of the MS Society of Canada and her passion for the people we serve has made her a valuable leader and she will be missed by all who have had the pleasure to work with her.
“Over the past 7+ years, I have continued to be inspired and humbled by everyone at the MS Society. When I moved in to non-profit, I had hoped to be connected to people who work to make changes in our world and I have been incredibly lucky to have been part of just that.” Trina Radford
Chapter News
The Kamloops and Area Chapter MS Connection Newsletter is intended to provide news and information to people living with MS, their families, caregivers, medical professionals and other stakeholders. Information/opinions contained in this newsletter are obtained from sources believed to be reliable, but their accuracy cannot be guaranteed. The MS Society does not approve, endorse or recommend specific products or services and respects an individual’s right to make their own health management decisions. However, we can provide information to assist people in their decision process. For specific, personalized information, please consult your physician or other health care professional.
On May 3rd, Fundraising Coordinator Katrina Harding, along with Kamloops Scotiabank MS Walk Organizing Committee members Trish Larson and Jessica Gray, went before Kamloops City Council to present about multiple sclerosis and the Scotiabank MS Walk.
It was then proclaimed by Kamloops City Council that May 2016 would be known as Multiple Sclerosis Awareness Month in Kamloops.
Trish, Jessica, and Katrina also presented each member of Council with a red carnation – symbolizing hope for a future free from MS.
Staff Update - A Good-bye to Regional Manager - Trina Radford
MS Awareness Month
Trina at last year’s Pedal Parking on Canada Day in Riverside Park.
MS Walk Committee volunteers Jes-sica Gray and Trish Larson with the MS Awareness Month Proclamation by the City of Kamloops.
Mike O’Reilly, Chair Ray Harrison, TreasurerColin Brandt, SecretarySheila BlackstockTim Livingston Jennifer TheissenAlicia Vicic
Chapter News
Recent Support from Our Community:• Dufferin Elementary Student Leadership
Group• Houle Electric Golf Tournament
• Aberdeen Elementary School - MS Read-A-Thon• RBC Foundation
Annual General Meeting (AGM)
Volunteer and Fundraising Thank you! Pat and Patricia Thompson and Duane LaFramboise
Pat and Patricia (Trish) Thompson have been involved with the MS Society since 2000 doing fundraisers like the Scotiabank MS Bike. In 2014, they started volunteering to bring in bottles from the Louis Creek Eco Depot. Duane LaFramboise from Louis Creek started this great fundraiser to put the many bottles dropped off at the Eco Depot to a good cause. Pat and Trish regularly go and pick up the many bottles collected by Duane and his crew and transport them to a bottle refund centre. They then send all of the money raised to the MS Society, Kamloops and Area Chapter. Over the last two years, this has amounted to $1585.90, or over 23,779 cans! We want to thank Pat, Trish, and Duane for their commitment to ending MS!
• Garfield Hines• Darren Hines• Freda Poole
• Clara Margaret Cleveland• Glenn Clarence Fosse
Donations in Memory Of:
The Kamloops and Area Chapter AGM was held on Saturday June 4th. Chair Carly Gordon re-ported on the recent activites of the Chapter and Treasurer Ray Harrison shared the 2015 financial report. If you missed the AGM and would like a copy of any of the reports, please contact the of-fice at [email protected] or call 250-314-0773, toll free 1-800-268-7582 ext 7262.
Following the AGM, MS Society, Programs and Services Coordinator Sherry Wezner provided an overview of current Programs and Services.
The Chapter would like to say a special thank you to outgoing board members Carly Gordon, Christina Antoniak, and Heidi VonSchoening. We truly appreciate the time, energy and committ-ment they have shared with the MS Society.
Thank you also to continuing board members - Chair Mike O’Reilly, Treasurer Ray Harrison, Sec-retary Colin Brandt and Directors Sheila Black-stock, Tim Livingston, Jennifer Theissen and Alicia Vicic.
Thank you to Aly Couch who raised $985 by collecting pledges for the MS Society at the 2016 Kamloops Triathlon.
Aly rode on a stationary bike for 5 hours and then ran for 1 1/2 hours.
More Fundraising to End MS!
Aly at the 2016 Kamloops Triathlon riding her bike and helping to end MS.
The Scotiabank MS Walk in Kamloops on Sunday, May 15th was a great success. With 585 registered participants, and the sun shining, over $75,000 was raised for MS research, and programs and services to help people living with MS to improve their quality of life.
Some highlights included having Dr. Helen Trem-lett from UBC talk about how she can leverage every $10 she receives for MS research from the MS Society of Canada to get an additional $100 in reasearch funding. There was a also a lot of fun to be had with the Dunk Tank! The incredible volun-teers and Team Spirit really made the day some-thing special.
We want to send a big thank-you to everyone who supported the Scotiabank MS Walk this year: participants, donors, volunteers, and sponsors!
If you would like to register now for the 2017 Scotiabank MS Walk you can reserve your spot at www.mswalks.ca.
The Most Spirited Friends and Family Team was team ‘Holy Walkamolies’. The Most Spirited Cor-porate Team was team ‘Change Your Pain’. The Top Fundraiser was Sal Salvaggio with $5,070. The Largest Team was team ‘The Warriors’ with 96 members!
This event would not have been possible without the dedication and hard work of the 2016 Kam-loops Scotiabank MS Walk Volunteer Organizing Committee. We want to extend special thanks to committee members Reg Longmore, Jessica Gray, Christine Christenson, Trish Larson, Cher-yl Doolan, Tara Swain, Dean Antoniuk, and Greg Nallewag.
The MS Bike is used as a vehicle for change all across Canada. Funds raised from this cycling event further the Mission of the MS Society to find a cure for multiple sclerosis and support people affected by MS today.
Upon evaluation of registration and community interest, the 2016 Kamloops Scotiabank MS Bike was cancelled and is under review for 2017.
If you are a cyclist you can still support the MS Society to end MS!
• If you want a challenge in the mountains, try out the MS Bike West Kootenay Glacier Chal-lenge on August 20th and 21st. For more infor-mation visit www.westkootenayglacierchal-lenge.ca.
• If you were a past Thompson River Ride par-ticipant and liked how the Kamloops MS Bike
stopped at Privato Vineyard and Winery, then you will LOVE the Okanagan Grape Escape in Kelowna on September 17th and 18th - visit msbike.ca and sign up today!
• Choose your own adventure - join I Challenge MS! For example:• Ride for 24 hours straight (not for the
faint of heart!)• Commit to ride and discover a new back-
road every weekend• Complete a mountain bike race every
month (or start with one?)• Sign up for any pre-existing event (like
a 6 hour mountain bike relay or a point to point race) and fundraise with the MS Society of Canada.
There are no limits to what you can do! Visit www.IChallengems.ca to learn more about this option.
Fundraising News
Kamloops Scotiabank MS Bike - Cancelled
I Challenge MS and Events-in-a-Box Make a difference for people living with MS by hosting your own MS fundraiser in your commu-nity. Through I Challenge MS, you can do ANY-THING to raise money: from hosting a golf tour-nament to climbing Mount Kilimanjaro, signing up for an existing event (like Ironman or Cross Country Ski race) to hosting a dinner party. The options are endless. For more information con-tact Katrina Harding or visit ichallengems.ca.
NEW: If you are ready to tackle a larger event,
contact Katrina and ask about our Comedy for a Cause “Event-in-a-Box” program. We provide all the resources you need to run an event, in-cluding: How-to guide, Critical Path, Forms and Spreadsheet resources, MS Society information brochures, and of course, support at every step of the way from Fundraising Coordinator Katrina Harding. Host a Comedy night in your commu-nity to end MS. Call Katrina Harding at 250-314-0773 or 1-800-268-7582 ext 7261 or [email protected].
Some photos from the 2016 Kamloops Scotiabank MS Walk. To see more photos please visit www.flickr.com/photos/mssociety_bcyukon/albums.
Here’s your chance to Muck the West Coast… Seriously, the WHOLE West Coast!
For the 2016 season, we are happy to provide a fundraising platform for muckers attending Mud Runs in all areas of BC and the Yukon.
Register for any mud run of your choosing and then create a fundraising page through Team Muck MS BC at www.teammuckmsbc.ca.
Muckers who raise our suggested minimum of $250, online and one week prior to their chosen event, will have a Team Muck MS BC T-shirt sent to them!
If you’re in the Lower Mainland on August 16th
2016 you can join in Rugged Maniac at the Clo-verdale Fairgrounds, Surrey BC. Suggested heats for Team Muck MS BC’ers to run together – 10:45am, 11:15am, 11:30am or 11:45am.
At Ruggested Maniac, MS Society Staff will be on site at the Team Muck MS BC booth. Muckers will be able to get before and after shots as well as t-shirts for top fundraisers! Use promo code: RUGGEDMS to receive the Team Muck MS BC $10 discount at Rugged Maniac. When you register using this code, Rugged Maniac will also be do-nating $5 back to the Multiple Sclerosis Society!
In the Kamloops Area - Sun Peaks will be hosting the Spartan Race on September 24th and 25th.
Find a full list of Muck BC events online at:www.teammuckmsbc.ca
For more information please contact our Team Muck MS BC Coordinator [email protected] or 1-800-268-7582 ext 7250.
Muck MS BC
Lower Mainland and South• Rugged Maniac – Surrey August 13th• Tough Mudder Seattle – September 24th and 25thWhistler and Squamish• Tough Mudder – Whistler June 18th and 19th• Tough Mudder Half – Whistler June 25th• Mudderella – Whistler September 24th• Battle Frog – Squamish Valley July 16thVancouver Island• Mud Mulisha – Shawnigan Lake August 20thThompson-Okanagan• Spartan Race – Sun Peaks September 24th and 25th• The Freakin’ Farmer – Oliver September 24thPrince George• Mudd Sweat and Tears – Prince George June 11thYukon• Mud Bog – Dawson City, August 14th
Step 1: Find your Muck
Step 2: Create your fundraising page and Muck MS! www.teammuckmsbc.ca
Raise $250 or more, and get a free shirt!
Register Now!
Lower Mainland and South• Rugged Maniac – Surrey August 13th• Tough Mudder Seattle – September 24th and 25thWhistler and Squamish• Tough Mudder – Whistler June 18th and 19th• Tough Mudder Half – Whistler June 25th• Mudderella – Whistler September 24th• Battle Frog – Squamish Valley July 16thVancouver Island• Mud Mulisha – Shawnigan Lake August 20thThompson-Okanagan• Spartan Race – Sun Peaks September 24th and 25th• The Freakin’ Farmer – Oliver September 24thPrince George• Mudd Sweat and Tears – Prince George June 11thYukon• Mud Bog – Dawson City, August 14th
Step 1: Find your Muck
Step 2: Create your fundraising page and Muck MS! www.teammuckmsbc.ca
Raise $250 or more, and get a free shirt!
Register Now!
Lower Mainland and South• Rugged Maniac – Surrey August 13th• Tough Mudder Seattle – September 24th and 25thWhistler and Squamish• Tough Mudder – Whistler June 18th and 19th• Tough Mudder Half – Whistler June 25th• Mudderella – Whistler September 24th• Battle Frog – Squamish Valley July 16thVancouver Island• Mud Mulisha – Shawnigan Lake August 20thThompson-Okanagan• Spartan Race – Sun Peaks September 24th and 25th• The Freakin’ Farmer – Oliver September 24thPrince George• Mudd Sweat and Tears – Prince George June 11thYukon• Mud Bog – Dawson City, August 14th
Step 1: Find your Muck
Step 2: Create your fundraising page and Muck MS! www.teammuckmsbc.ca
Raise $250 or more, and get a free shirt!
Register Now!
Lower Mainland and South• Rugged Maniac – Surrey August 13th• Tough Mudder Seattle – September 24th and 25thWhistler and Squamish• Tough Mudder – Whistler June 18th and 19th• Tough Mudder Half – Whistler June 25th• Mudderella – Whistler September 24th• Battle Frog – Squamish Valley July 16thVancouver Island• Mud Mulisha – Shawnigan Lake August 20thThompson-Okanagan• Spartan Race – Sun Peaks September 24th and 25th• The Freakin’ Farmer – Oliver September 24thPrince George• Mudd Sweat and Tears – Prince George June 11thYukon• Mud Bog – Dawson City, August 14th
Step 1: Find your Muck
Step 2: Create your fundraising page and Muck MS! www.teammuckmsbc.ca
August 9th, 2016, 5 – 6:15pm Pacific TimeWorkout Your Worries: Anxiety and Exercise in MSPresented by Meghan Beier, Ph.D & Amanda Rohrig, PT, DPT
If you live with MS, you are twice as likely to experience anxiety and mood disorders. In fact, up to 60% of people with MS experience low mood or depression, and up to 40% experience anxiety. Please join psychologist Meghan Beier, Ph.D., and physical therapist Mandy Rohrig, PT, DPT, for an honest interactive conversation about recognition of mood changes and ways to manage mood with physical activity.
October 11th, 2016, 5 – 6:15pm Pacific TimeTogether in MS: Supporting Family and Friends of People with MSPresented by Rosalind Kalb, Ph.D & Juliann Hanson-Zlatev, OTR
Multiple sclerosis not only affects the person with MS, but it also impacts all those who care about and provide support for the person living with the disease. Anyone in this important role experiences a variety of emotions and concerns when adapting to the challenges MS brings to their lives. This webinar will provide a unique opportunity for support partners and the person living with MS to adopt skills, strategies, and tools needed to live together fully with this chronic, unpredictable disease.
November 8th, 2016, 5 – 6:15pm Pacific TimeDiet and Multiple Sclerosis: A Neurologist’s PerspectivePresented by Pavan Bhargava, MD
The Paleolithic Diet. The Mediterranean Diet. The McDougall Diet. The Swank Diet. With so many diets being promoted, it is hard to fully understand each of their nutritional benefits, possible deficiencies, and effects on multiple sclerosis. In addition to explaining the impacts that our diet has on MS and offering evidence around some popular dietary strategies, Dr. Bhargava will answer your questions and guide you to make healthy eating choices that will benefit you and your MS!
Read more and register for any of these webinars at: www.mscando.org/multiple-sclerosis-programs/webinar-series/register/
Did you miss a previous webinar? You can still watch it in the webinar archive!
Upcoming WebinarsCan Do Multiple Sclerosis and the National MS Society
September 20th, 2016, 8:30am Pacific TimePain Related Distress: Recognition and Appropriate Intervention Co-Hosted by Pain BC & Canadian Institute for Relief of Pain & Disability
Tamar Pincus, PhD-Professor in Health Psychology, Royal Holloway, University of London
Many people who live with chronic pain report that they also suffer from low mood, irritability, and withdrawal from activities and relationships. Although traditionally this was conceptualised as ‘depression’, new evidence suggest that it is
qualitatively different from clinical depression, and not surprisingly, the interventions that have been developed for groups with clinical depression don’t seem to be of much help in the context of chronic pain. Dr. Tamar Pincus will describe this evidence and suggest ways in which clinicians can distinguish between depression and pain-related distress. She will also describe current intervention and propose ways of improving clinical and self-management for people with chronic pain. To register visit:attendee.gotowebinar.com/register/5788328761461496321
Sessions are held the first and third Tuesday of each month, 10:30am at Gemstone Care Centre, 1955 Tranquille Road, in Kamloops, BC The next one will be on September 6th.
Cathy Lidster, Feldenkrais practitioner, will be facilitating a chair based movement portion (45 minutes) which is suitable for all mobility levels. Please visit www.feldenkrais.com for more information about the Feldenkrais Method.
Sessions are free of charge and are open to anyone and/or their family members/care partners.
On the third Tuesday, after Feldenkrais, there is an information session on various topics. Our guest speaker at the September 20th session will be Cara Humphreys, physiotherapist.
Cara will speak about services provided by physiotherapists and how this can benefit those with MS.
Programs and ServicesMovement for Wellness and Information Sessions at Gemstone Care Centre
If you have a limited income and are seeking fitness opportunities, you may want to consider applying for a subsidized membership at the YMCA-YWCA through the Kamloops Y Opportunity Fund. More details this program are are available at www.kamloopsy.org/ymembership.htm.
The City of Kamloops also has funding available through ARCH (Affordable Recreation for Community Health) to individuals and families with financial challenges. Visit www.kamloops.ca/socialdevelopment/arch.shtml for more information. You can also contact the office to learn more about these options.
Fitness Opportunities
Social Lunch - White Spot North ShoreSocial Lunch occurs on the first Wednesday of each month at noon at the White Spot North Shore (675 Tranquille Rd, Kamloops) and is open to all people with MS and their partners/family members.
Participants cover the cost of their own lunch. Upcoming lunches will be held on September 7th
and October 5th. There will be no Social Lunches in July or August.
Pain BC Website
For those with chronic pain, Pain BC is a great re-source: www.painbc.ca. The Pain BC toolbox has resources on many topics such as getting help, improving sleep, and pain management.
To access the tool kit visit: www.painbc.ca/chronic-pain/pain-toolbox.
Disclosing Disability
The Disability Alliance just released this excel-lent publication on Disclosing Disability, for those thinking of disclosing their disability to their em-ployer.
We are looking for young adults ages 19 to 40 who might be interested in forming a young adults group. Getting together with others af-fected by MS provides an opportunity to share ideas with others, in a relaxed setting. We have a Young Adults Group in another chapter in the in-terior, and they meet monthly for dinner at vari-ous restaurants or pubs.
Here is what one of those attending the Young Adults Group has to say: ”Even though I have great family and friend support, it helps to talk with others that can relate to what it’s like to live with MS- especially to find humour even with the difficult times. I always look forward to the next meeting.”
Please let Sherry know if you are interested in be-ing part of a Young Adults Group by e-mailing [email protected] or by calling 1-800-268-7582 ext 7299.
Programs and ServicesYoung Adults Group
Beat the Heat!
Independent Self Help Groups are formed by volunteers who are interested in helping to bring together individuals and families with MS. These groups operate independently, supported by the MS Society of Canada with information and resources. The Kamloops and Area Chapter recognizes the importance of support in one’s own community, and providing a means for individuals and families
to reach out and connect with each other. Each community is unique in the kind of support that is available.
To find out if there is an active self-help group in your community, or for information about starting a self-help group, please contact the MS Society at 250-314-0773 or 1-800-268-7582 ext 7299.
Independent Self Help Groups
Some indiviuals with MS find that heat can cause a temporary worsening of MS symptoms. To help with this, cooling products are available by do-nation at the Kamloops and Area Chapter office. Please call 250-314-0773 or 1-800-268-7582 ext 7262 for more information, or to arrange a time to stop by the office to check out the cooling products.
PEERSUPPORT
PROGRAM
PEERSUPPORT
PROGRAM
You are not alone in living with multiple sclerosis.
The MS Society of Canada is pleased to offer a confidential peer support program to connect you with trained volunteers who also live with MS.
For more information, contact [email protected] 1-800-268-7582 x3149
Canadian Bone Marrow Transplantation Trial: Quick FactsResearch Updates
What was the study?
• In 2000, the Multiple Sclerosis Society of Can-ada and Multiple Sclerosis Scientific Research Foundation (MSSRF) funded a multi-centre clinical trial, entitled ‘Targeting Multiple Scle-rosis as an Autoimmune Disease with Intensive Immunoablative Therapy and Immunological Reconstitution’. The trial received a total of $6,475,344 in funding.
• The aim of the trial was to determine whether immunoablation and autologous hematopoi-etic stem cell transplantation (IAHSCT) in peo-ple with MS can stop the disease.
• The study, now referred to as the Canadian Bone Marrow Transplantation (BMT) trial, was led by Drs. Mark Freedman and Harry Atkins from the Ottawa Hospital Research Institute.
• Recruitment for the trial began in 2000, and the first transplant was completed in 2001. A total of 24 participants underwent IAHSCT, which involved receiving a potent chemother-apy regimen to remove the immune system, followed by transplantation with stem cells. The purpose of the procedure was to remove the abnormal immune system and replace it with a healthy new one.
• Due to the serious side effects associated with chemotherapy, only those individuals who had aggressive, highly inflammatory relaps-ing-remitting MS (RRMS) were considered and accepted to the trial.
• The stem cells used for the treatment were au-tologous, meaning they were collected from the bone marrow of the participants them-selves. This eliminated the risk of rejection as the cells are from the individual and not from a donor.
• Participants were monitored over a period of up to 13 years post-treatment. Researchers assessed levels of disability, number and size of inflammatory brain lesions, changes in
brain volume over time, and measures of so-cial wellbeing.
• Additional experiments were conducted to further understand the participants’ responses to the treatment. These included comprehen-sive clinical, MRI and immunological studies.
• Results of the Canadian BMT Trial were pub-lished on June 9, 2016 in The Lancet.
What did they find?
• Published results from the BMT trial demon-strate that IAHSCT is highly effective in stop-ping new inflammatory disease. Specifically, no new relapses or brain lesions were ob-served in 23 participants during the entire fol-low-up period.
• Researchers also found that 70% of partici-pants showed no evidence of disability pro-gression over the long-term, 40% experienced unexpected recovery in various functions like strength and improved movement coordi-nation, and some participants experienced marked improvements in several measures of social wellbeing.
• One participant died of complications from liver failure approximately 2 months after un-dergoing the IAHSCT procedure.
What does it mean?
• Publication of the clinical trial results in a peer-reviewed scientific journal indicates that the data has been reviewed thoroughly by experts, and allows medical professionals and key de-cision makers to evaluate the treatment’s effi-cacy, safety, and eligibility for Canadians living with MS.
• While the results are highly encouraging, IAH-SCT remains to be a complex procedure that involves intense, potentially toxic chemother-
MS CONNECTION SUMMER 2016 11
apy. Thus the treatment is warranted for those who have aggressive, highly inflammatory re-lapsing-remitting MS (RRMS) who have not re-sponded to disease-modifying therapies.
• It is unclear whether IAHSCT can benefit those who have experienced a high level of MS-related disability over a prolonged period of time and/or exhibit low levels of inflammation in the brain and spinal cord.
• Other IAHSCT trials have been completed or are currently taking place around the world, which include different methods, eligibility criteria, and chemotherapy cocktails. Together this body of research, in addition to the Cana-dian BMT trial, greatly enhances the MS com-munity’s understanding of the full risks and benefits associated with IAHSCT as a treat-ment for MS, and paves the way for ongoing research on treatments involving stem cells for all forms of MS. The BMT Trial, in particular,
offers a unique perspective on the sustained effect of the treatment over the long term.
• Currently, The Ottawa Hospital is accept-ing referrals for eligible patients for IAHSCT. Speak to your neurologist if you are explor-ing this treatment option. Questions related to the procedure, payment/coverage details, eligibility, monitoring, etc. are to be directed to The Ottawa Hospital. More information can be found on their website.
• With funding from the MSSRF, Dr. Mark Freed-man recently initiated a clinical trial involving mesenchymal stem cells with co-lead inves-tigator Dr. James Marriott from the University of Manitoba.
For more information and additional research updates visit:mssociety.ca/research-news.
Canadian Bone Marrow Transplantation Trial: Quick Facts - Continued
Dr. Helen Tremlett MS Research Presentation in KamloopsOn May 14th 2016, MS Researcher Dr. Helen Trem-let offered a presentation for the MS Society on some of her recent research findings.
Dr. Tremlett is the Canada Research Chair in Neu-roepidemiology and Multiple Sclerosis and Pro-fessor in the Faculty of Medicine, Division of Neu-rology at the University of British Columbia (UBC).
Dr. Tremlett covered life expectancy in MS, MS and incidence of cancer, pregnancy and MS and the effectiveness of the immunomodulatory drugs (IMDs) for MS. She also introduced some of her newest research into the gut microbiome in children with MS.
In addition to her presentation on Saturday, Dr. Tremlett also attended the Kamloops Scotiabank MS Walk on Sunday, May 15th. She helped start the event off by sharing her enthusiasm for MS re-search and then participated in the 5km walk.
Dr. Tremlett par-ticipating in the 2016 Kamloops Scotiabank MS Walk.
The Saturday MS Research presentation with Dr. Helen Tremlett.
