fall connection 2010 - ms society · 2010. 11. 4. · a newsletter for the kamloops & area...

MS Connection Fall 2010

FALL 2010

A newsletter for the Kamloops & Area Chapter of the MS Society of CanadaOffice Location:#180-546 St Paul St Kamloops, BC V2C 5T1Phone: 250-314-0773 or 1-888-304-6622

Find the MS Society online!

Our Chapter Website:www.mssociety.ca/kamloops

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ConnectionIn This Issue

Staff Update

Chapter News

MS Bike Tour

Fundraising

Community Services

CCSVI

Rural Views by Heidi Redl

National Announcement

Calendar12

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Photos from Streak to End MS at the Summit Centre Chatter’s Salon and Beauty Supply Outlet held on September 2nd.

Thank you to all of the staff at Chatter’s Salon who donated their time and talent, and to everyone who made their mark against MS.

Join our MS Newsflash, or check our Chapter website for current information about the programs and other special events that our Chapter offers.


Just over a year has passed since I started at the Kamloops and Area Chapter office in my role as an Administration and Communications Assistant. This year has definitely been full of learning and change.

Over the past year, I have been busy in several different areas at the Chapter including offering the MS Read-A-Thon program, working with our Katimavik volunteers, following Ian Fillinger’s Race Across America to End MS and assisting with the MS Walk and MS Bike tour fundraisers. I continue to work on our Chapter newsletter and update our website. I also streaked (my hair that is!) at our first Streak to End MS event in September. This successful event was held at Chatters Salon where the chapter staff and several other community members, dyed a bright red steak in their hair to show support for ending MS.

There have been some staffing changes at the office with Trina Radford going on maternity leave and Natasha Chisholm coming on board as Chapter Manager in May. Charlotte Rollans joined us again over the summer as our summer student. We also welcomed a new regular office volunteer, Jenny, in January and five Katimavik volunteers have had placements in the office since last October.

When I started here, I certainly could not have anticipated the impact of CCSVI (chronic cerebrospinal venous insufficiency) research. I’m not sure that a work day has gone by in the last 11 months since the CTV news story first aired that staff discussion has not at some pointed ended up on CCSVI. At times, we have struggled with the unknown questions, policy and social media’s response to CCSVI research and treatment. We have listened to the diverse responses of chapter members including excitement, criticism and scepticism. I know that I am eager to see the results of the current CCSVI studies, and hope that we will have more CCSVI and MS answers in the near future.

Finally, I have appreciated the opportunity to meet the community of people who are connected to the MS Society (either by a diagnosis of MS or by the diagnosis of a friend or family member); it certainly has had an impact on my understanding and knowledge of MS. I look forward to learning more about MS, and continuing my work here at the Kamloops and Area Chapter.

Leanne Fisher

Staff Update: Letter From Leanne

Recent support from Our Community

General Donations:Pineridge Golf CourseScotiabank, Kamloops - North ShoreHRDC

In Memory Of:Joyce LeuckLolly (Linda) Fehr

Leanne at Streak to End MS

Did you know our chapter now has a Facebook page?We are now online at: www.facebook.com/mssocietykamloops

Click on the “Like” button to join us and keep up to date with all our latest news as it happens!


Staff

Natasha Chisholm, Chapter Manager & Fund-raising CoordinatorCyndi Lion, Community Services CoordinatorLeanne Fisher, Administration & Com-munications AssistantCharlotte Rollans, Chapter AssistantTrina Radford, Chapter Manager & Fundraising Coordinator (on leave)

Board of Directors

Dr. Paul Dagg, ChairBritt Antoniuk, Vice ChairRoss Parkin, TreasurerMike O’Reilly, SecretaryHilda BuchananDoug ClemisLee EnnisIan FillingerJohn GroverJoan HughesDarlene KellyGeri Rines

An Update from our Summer Chapter Assistant Charlotte

Two days after I finished helping at this year’s Rona MS Bike Tour, I hopped on a plane and was on my way to Norway! I spent a little over two weeks backpacking around

Scandinavia. I visited parts of Norway, Denmark, Sweden, and even got to spend a day in Finland! I saw some amazing things, but my favourite part of the trip was a tour of some fjords in Norway. They were absolutely beautiful! After my backpacking trip, I headed off to England, where I will be attending Lancaster University for the rest of this year. So far everything has been going extremely well, but since the first day of class was only on Thanksgiving, I haven’t had a lot of work to do yet! I have been meeting lots of people, and I like my residence, which is a townhouse with 12 people in it! So far, all of my flatmates have been really great.

I am looking forward to travelling a lot this year, and I have booked weekend trips to Edinburgh, York, Liverpool and Dublin, and plan to take a tour of some Mediterranean countries over Christmas break. I will be off on lots of adventures, but I won’t forget my time spent working at the MS Society because it was great!

Charlotte

Chapter News

Welcome to Jean-Philippe (JP) our September to December Katimavik volunteer from Quebec.

Photo: JP at his desk.

Other Staff News

Trina Radford, Chapter Man-ager and Fundraising Coordi-nator, is currently on materni-ty leave. (Her daughter Soleil was born on June 8th.)

We wish Trina, dad Dave and Soleil all the best (and maybe a little more sleep!) in their new adventures as a family.

Photo: Trina, Dave and Soleil check out the Adams River Salmon Run.


2010 RONA MS Bike Tour

Thank You to Our Sponsors!

LOCAL

Top Fundraisers:Danny Latin - $3170Sue Whittaker - $2561Dino Gnoato - $2120Duane Hennig - $1500.55

Top Teams:Team Latin - $3990Team Lillooet - $3888K-City Rollers - $3867.55Tabroosky Pedalers - $1870

Best Team Name:Mountain Mommas, Captain Brenda Cosgrave

Best Team Spirit:Tabroosky Pedalers, Captain Marie Mudry

This year the Rona MS Bike tour raised just over $31,000!

Thank you to everyone who participated and supported the event!


Volunteer Kathy talks with Paul Graham from Radio NL.

Volunteer Charity and Chapter Manager & Fundraising Coordinator Natasha Chisholm at the Fortune A&W in Kamloops.

We are happy to celebrate that the A&W cruising for a cause day on August 26th, 2010 was a HUGE success almost doubling last years total!

The nationwide campaign brought in a tremendous amount totalling $710,000! It was raised through Teen Burger sales, cut-outs, wristband sales, social media, and a generous donation from the A&W head office.

Locally, the A&W staff were great - raising over $13,000 within the 6 Kamloops locations! A big thank you for their excitement and enthusiasm. We look forward to working with A&W again in 2011! Also a thank you to our volunteers Jenny, Charity and Kathy who helped out on event day.

Team Report for the Rona MS Bike Tour• Over 50% of registered riders were on a team!• Interior Grassland Cycling Club came out again this year tripling their

fundraising with double the team members!• Tabroosky Pedalers was a brand new team, bringing in 15 people and

taking the title of team spirit with while sporting awesome red bowas • Best team name went to Mountain Mommas!• On event day, long time friends and family Team Lillooet took home the

top team award and Sue Whittaker was also the top individual fundraiser!• Danny Latin continued to show his committment to fundraising after the

bike tour, making him top fundraiser for 2010. This also moved Team Latin up to the top team spot!

• We welcomed back corporate teams New Gold Block Cavers for a Cure, Team BOB, Total Balance Health and Fitness and Ronaflatbottoms!

• We were excited to see familiar faces from K-City Rollers and The Carr Crew!

Fundraising News


Community Services

Fall Family Event

We were excited to receive another donation of Blazers Hockey tickets from the CN Rail Community Ticketing Program this year. A huge thank you goes out to CN Rail, and to Spike and everyone at the Blazers office and main box office for all their assistance.

Despite the fact that the Blazers were not able to conquer the Prince George Cougars on October 16th, it was still a great evening out.

Volunteer support at our family events and donations of new, kid friendly prizes are always appreciated. If you have any general questions or comments about our family events, or wish to donate your time or prizes, please contact Cyndi at the office.

Outreach

Our Community Services Coordinator, Cyndi Lion visited the communities of Ashcroft, 100 Mile House, and Williams Lake this fall. Thank you to everyone who made it out. If you live in any of these communities and did not receive notification of the visit, please contact the office or send Cyndi an email with your current contact information. If you wish to be added to our MS Newsflash list, be sure to include your current email address.

Photos from our Family Event

Recent Photos from Outreach

Williams Lake

100 Mile House


Holiday Social Lunch

Since we had such a great time last year, the annual holiday social lunch will again be held at the Army, Navy & Airforce Veterans (Anavets) hall on 444 Tranquille Rd. Date/time: December 1st 12-1:30pm Cost: details to be announced, but we are hoping the cost will be the same, or very close to what it was last year ($8.50 per person for a full hot turkey dinner).

People with MS, carepartners, family members, friends, MS Society staff, volunteers, and board members are all welcome at the Holiday Lunch. Please RSVP by November 25thth. Payment for lunch is to be made in advance at the Chapter office (no later than November 30th please).

Regular Social Lunch

The first Social Lunch of 2011 will be January 5th from 12:00-1:00pm (location to be announced). Participants cover the cost of their own lunch, and each month there will be a prize draw (gift certificates, t-shirts, etc.)! This casual group is open to people with MS and their carepartners (friend, spouse, family member). If you have any feedback about the lunch, please feel free to contact Cyndi to discuss.

Living With MS

On September 23rd we featured CCSVI as the topic for our Living with MS group meeting. The session was very well attended and generated a lot of interesting discussion. Cyndi sent out a follow up MS Newsflash after that session for people who were unable to attend. Anyone with any further questions or comments about the CCSVI session can contact Cyndi at the Chapter office.

The Living with MS Support Group is open to all people living with MS and their adult carepartners who would like to meet, share information, and learn from others. The group meets on the fourth Thursday of each month from 12-1pm (except for July, August and December) at the Chapter office. Generally every other month there will be either a special discussion topic or a guest speaker. On November 25th, we will welcome presenter Rhonda Eden, Registered Holistic Nutritionist, to share information about healthy eating. The group will take a break in December and will meet again on January 27th, 2011.

Community Services

Please contact Cyndi at 250-314-0773 or via email at [email protected] to RSVP for events and for more information.

Photos from September Living with MS


Self Help Groups

Chase Regular monthly meetings occur on the third Monday of each month at 10am in the Chase Health Centre conference room. Please call Georgie at 250-679-3505 or Lorraine at 250-679-8844 for more information.

Williams LakeThis group meets on Tuesday evenings every 6 weeks. The next meeting is scheduled for November 16th. Meetings are held at 5:30pm in Education Room A/B at Deni House. Contact Christina Price at 250-305-6008 (after 5pm) or via email at [email protected] for more information.

Hamlets

Cyndi Lion, Community Services Coordinator, visits residents with MS at the Hamlets 10:30-11:30am on the 2nd Wednesday of each month. This casual gathering usually includes sharing of Kamloops Chapter news and general MS information. The next visits will take place on November 10th and December 8th. Family members are welcome to attend these sessions. Individual visits can also be arranged if preferred to a group discussion.

Carepartners

Our Carepartner services include quarterly educational group sessions (if sufficient demand) and individual support, information, and referrals. Additionally, the Living with MS support group is now open to Carepartners.

Carepartners requiring emotional support may access the Bounceback program which is available free of charge. For more information about this program visit www.bouncebackbc.ca or discuss the program with your family doctor. Cyndi is also available to answer any questions about the services that are available to carepartners, or general questions about MS.

Feldenkrais

If you still haven’t experienced Feldenkrais, please come out and join us for our last couple sessions of the fall season. On Saturday, November 27th Tyson will be offering a class at the Hamlets from 10:30-11:30am (residents with MS, friends, family members, carepartners and Hamlets staff are welcome), and on Tuesday, November 30th Tyson will be at St. Paul’s Cathedral (360 Nicola Street) from 10am-12pm. Providing demand and funding for these classes is sufficient, we hope to continue offering Feldenkrais at both locations in the new year. Please watch your MS Newsflashes and our Chapter Website to get current information about these and other wellness sessions.

Community Services

For any questions regarding the in-formation on the Community Services pages or to register for an event, please contact Cyndi Lion at 250-314-0773 or [email protected].

Save the Date!

Our 2011 Scotiabank MS Walk is scheduled for Sunday, May 15, 2011 (Note that the date is later this year due to Easter and Mother’s Day.)

Register now at mswalks.ca!


CCSVI

What guidance does the MS Society provide on CCSVI treatment?

The decision to seek treatment of any kind is a personal one. The MS Society of Canada respects the right of people living with MS to make their own treatment decisions including the choice to seek treatments which may be considered experimental. The role of the MS Society is to provide guidance to people to make informed decisions by providing the best information and evidence available to assist those we serve in their decision-making.

Additionally, for safety reasons, the MS Society recommends that people with MS be examined or treated for CCSVI only within an established research protocol where suitable safety and outcome monitoring is assured.

What are the next steps to study the CCSVI hypothesis?

Part 1: Determine the relationship between CCSVI and MS.

Researchers agree generally that information must be gathered on frequency and prevalence of the condition before moving on to testing the treatment of blocked veins. A sample of questions that need to be answered in this first step: • Does it occur in all people with MS and in

all types of MS?

• Does CCSVI occur in people who do not have MS?

• Does CCSVI occur in children? • • Is CCSVI caused by MS or vice-versa? • • What are the implications of the blocked

veins? Poor blood flow? Iron deposits?

Answering the above questions involves the use of imaging technologies and not treatment of the condition itself.

Part 2: Determine the effects of treating venous insufficiency.

If part 1 is successfully completed and the results demonstrate that people with MS do have blocked veins, researchers will then look at how treatment of the condition could benefit care of people with MS. Questions that will need to be answered include:

• Do the effects of the treatment work in all types of MS?

• How long do the treatment effects last?

• Can the results be replicated in a ‘blinded’ study where neither participants nor researchers are aware of the treatment they are receiving?

• What are the reliability, risks and benefits of the treatment?

• How does this treatment compare in effectiveness and safety to existing therapies?

What is the MS Society’s role in CCSVI research?

The MS Society’s primary role in research is to fund the avenues of greatest potential and scientific excellence. It is with this role in mind that the MS Society opened up its research grant application process specifically to study CCSVI and MS.

By funding research into MS and CCSVI, the MS Society hopes that clarity will emerge as to the relationship between the two. If the treatment of CCSVI is proven to be a valid therapeutic treatment option for MS, then the MS Society would have a role in lobbying to make it widely accessible.

Where can I find more information about CCSVI?

Visit www.mssociety.ca/ccsvi

Or call the Kamloops and Area Chapter at 250-314-0773 or toll free 1-888-304-6622.


Views from Rural BC - By Heidi Redl

T he feeling of peace is gone. That wonderful feeling made up of serenity and acceptance, that feeling that

followed the bargaining, the anger, the grieving and the denial on the emotional roller coaster of learning to live with Multiple Sclerosis is gone. I had hoped it would last for the rest of my life. Instead, it lasted for all of two weeks.

Someone I know here in Williams Lake went to India for treatment for Chronic Cerebrospinal Venous Insufficiency (CCSVI) earlier this summer. Suddenly, my comfortable world of peace and acceptance was flipped upside down. I started doing my own research, spent hours on the Internet each day, read countless blogs posted by other people with MS and bookmarked pages and newsfeeds to do with CCSVI.

My neurologist said, “Wait a year, see what happens, this is a new field and I don’t recommend it for anyone with MS.” Then she said, “You need to start wearing a foot brace and using a cane for walking.” My doctor said, “Ew, angioplasty in a vein?! That’s dangerous.” Then he said, “I haven’t done any research into the matter myself.”

Still, the reports from people who had the procedure done were pouring in from all over. Blogs on the Internet showed You Tube videos of MS patients both before and after the procedure. One young woman in Calgary caught my eye. She has a left foot drop like mine, walks with a pronounced limp and has very little use of her left hand. She could be me, except she’s a lot younger. She’s also a lot braver.

Heather (not her real name) had no money but together with her friends and husband got an online auction together and sold donated items to raise money for her trip to Mexico to have the CCSVI procedure done. “Gee,” I said to my husband, “Look at that.” He right away said, “Don’t worry about the money, we’ll figure it out.”

All over the world people with MS are flocking to private clinics to have the angioplasty procedure (dubbed Liberation Therapy) done. Everywhere except here in Canada. I contacted the clinics in Poland and Germany and Mexico. The waiting list for Poland is currently one and a half years. The doctor in Germany said if I could come at the end of August he could fit me in. I panicked – I just wasn’t ready yet. Mexico asked when I would like to come. I picked the end of November, thinking I would be ready by then.

As soon as I set a date, registered with the clinic and booked my flight I had the most wonderful feeling of excitement. Now I wonder why I wanted to wait until November. The decision to undergo CCSVI treatment is a very, very personal one. I’ve realized I had to wait until I was ready. On the one hand, I don’t like the thought of having someone push a sharp instrument through my jugular veins. On the other hand, I don’t like the thought of having someone push me around in a wheelchair if this disease gets any worse. I’m only 47 years-old. I used to be a long-distance runner and now I shuffle around on a cane and think twice about climbing short flights of stairs.

Enough is enough and for me, it is very important to be proactive. After years of sitting back and learning to live with diminishing physical capacity, diminishing hope and diminishing expectations I can do something. I know the odds: one third of people who have the CCSVI procedure experience immediate and great improvement in their MS symptoms, one third experience mild to moderate improvement and one third experience no improvement or difference at all. I’m going to take the chance. I have to.

My family and friends have asked me to keep them informed as to my progress through this whole procedure and I have started a group email list in order to do that. If anyone wants to have their name and contact information


Views from Rural BC Continued:

added to that list or has any questions about the clinic or the operation they can email me at [email protected]. You can call me too, at 250-296-3414 but be aware that you will probably get an answering machine as I can’t move to answer phone calls as quickly as I once used to.

Announcement: MS Society of Canada commits $1 million for CCSVI clinical trial

T oronto, Ontario - September 16, 2010 – The Multiple Sclerosis Society of Canada board of directors unani-

mously approved a motion to reserve $1 million for a chronic cerebrospinal venous insufficiency (CCSVI) and MS pan-Canadian therapeutic clinical trial. The funding will be set aside so that an immediate infusion of funding will be available when such a trial is developed and approved.

“We want to hit the ground running when a therapeutic trial is warranted and approved,” says Yves Savoie, president and CEO of the MS Society. “Ensuring funds are available to support a Canadian trial will accelerate our ability to get definitive answers to the ques-tions people touched by MS urgently seek.”

The MS Society of Canada hopes to work with the provinces and the federal govern-ment to secure all of the funding for a thera-peutic clinical trial. At the recent health min-isters’ meeting in Newfoundland, provinces and territories collectively stated that the is-sue of CCSVI is a top priority.

“We applaud the spirit of cooperation that the federal, provincial and territorial govern-ments have shown in moving CCSVI to the forefront of the country’s health agenda,” says Savoie. “The MS Society of Canada is ready to play a central role in preparing for and funding a scientifically rigorous pan-Ca-

nadian therapeutic clinical trial to test CC-SVI.”

The MS Society has advocated for more re-search since the CCSVI theory became wide-ly publicized in the fall of 2009. Already, $2.4 million has been committed by the MS Society of Canada and the National MS So-ciety (USA) to support seven research proj-ects focusing on CCSVI and its relationship to MS.

Earlier this summer, the Federal Minister of Health accepted the Canadian Institutes of Health Research’s recommendation to create an expert scientific working group to monitor the results of the studies already underway. The experts will analyze the evidence about the definition and nature of venous blockag-es and their relationship with MS, since this information will be central to obtaining ethi-cal approval to enrol participants in a trial.

“The MS Society is committed to doing all that it can to ensure that an eventual trial will be rigorously designed and successfully implemented,” concludes Savoie. “We will continue to expedite the research process so that the treatment potential of CCSVI as it relates to MS can be understood as quickly as possible.”

National Announcement

Author Heidi Redl


Fall 2010

Please return undeliverable mail to:

Acknowledgements

Thank you to the Province of British Columbia and Kamloops North Rotary Club for funding this newsletter.

Contributors

Cyndi Lion, Natasha Chisholm, Heidi Redl, Charlotte Rollans and Leanne Fisher.

Kamloops & Area Chapter

Contact us at:250-314-0773or toll [email protected]/kamloops

Calendar of Events

Nov 10 - Hamlets VisitNov 15 - Chase Self-Help GroupNov 16 - Williams Lake Self-Help GroupNov 25 - Living with MS GroupNov 27 - Feldenkrais at HamletsNov 30 - Feldenkrais at St Paul’sDec 1 - Christmas Social LunchDec 8 - Hamlets VisitDec 24 to Jan 3 - Kamloops & Area Chapter Office Closed for HolidaysJan 5 - MS Social LunchJan 27 - Living with MS GroupMay 15 - Scotiabank MS Walk

Final Notes

Disclaimer: 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. Articles in this newsletter do not necessarily represent the position of the MS Society but are solely representative of the position and opinions of the contributors.

fall connection 2010 - ms society · 2010. 11. 4. · a newsletter for the kamloops & area...

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