www .m s s o c i e t y . c a 1 - 8 6 6 - 3 5 2 - 3 9 9 7

The West Kootenay Contact

Volume 11, Issue 3

May/June 2011

New National Monitoring

System

2

Annual General Meeting Info

& Panel Presentation by

Members who had CCSVI

Treatment

3

Blogging for Youth 4

Clumsy Cook 5

MS Summer Camp for Kids 6

Article: Sunlight & MS 7

Article: Marijuana & the Brain 8

Thanks to our Sponsors and

Participants re Walks in

Nelson and Trail

9

Ask the Expert—Talking to

your kids about MS

10

Resources for Kids 11

New Nelson Resource and

Drop-In Center

11

Walk Photos 12—13

Research Update—MS symp-

toms prevented in mouse

model by barring immune cells

14

Exercise Subsidy Info 15

Chapter Contact Info 16

Inside this issue:

It was a beautiful day for our Nelson Scotiabank Walk

for MS… the crowds were smaller in Nelson and Trail

this year, but West Kootenay participants and sponsors

still raised an amazing $40,000 for our Chapter!

Page 2

Ottawa – March 23, 2011 – The Multiple Sclerosis Society of Canada

welcomes the federal government’s announcement of a national monitoring system that will capture information to help identify

disease patterns and track treatments and long-term outcomes for people living with MS.

The system announced in March will be developed by the Canadian Institute for

Health Information (CIHI) in close collaboration with the Canadian Network of MS Clinics and the MS Society of Canada. Federal funding through the Public Health

Agency of Canada will support its development. Representatives of people living with MS, clinical and technical experts from across Canada and provincial and

territorial governments will provide input into the design and development of the system.

“People living with MS are at the centre of our work and we look forward to collaborating with the MS community, governments, health agencies and the

Canadian Network of MS Clinics to build the monitoring system,” says Yves Savoie, president and chief executive officer of the MS Society of Canada. "The more that

is understood about the disease, its progression and the use of treatments in this

country, the more people with MS can make the best choices about their own care.”

Clinical and demographic information will be collected from people living with MS across

Canada on a voluntary basis through their health care practitioner. The Canadian Network

of MS Clinics will be the main data suppliers to CIHI. The data will be stored and used

according to CIHI’s privacy protection policies and procedures, which are recognized as being

among the most robust in Canada. Once sufficient information is collected for analysis

purposes, CIHI will begin producing reports that will be made publicly available for people

living with the disease and for all Canadians.

“People living with MS will be the ultimate beneficiaries of this monitoring system

as it will shed light on important topics like CCSVI, the long-term benefit of current therapies and also serve as an invaluable tool in assisting researchers, health

professionals and policy makers in their work,” concludes Savoie. “We are pleased that MS has been recognized as a top-priority health issue and thank Federal

Health Minister Leona Aglukkaq for making this important initiative possible.”

Ottawa, March 23, 2011. Chief public

health officer Dr. David Butler-Jones,

Health Minister Leona Aglukkaq,

Dorothyanne Brown who lives with MS

and MS Society president and CEO Yves

Savoie mark the launch of the MS

monitoring system.

MS Society welcomes new national

monitoring system

Page 3

West Kootenay Chapter Annual General Meeting Join members and your Board of Directors for our 10th Annual General

Meeting, and stay for a panel presentation by several of our members who have

had the Liberation Treatment to correct CCSVI (chronic cerebrospinal venous

insufficiency).

1:30 pm: check in and sign up as a Chapter member (the cost is $10/year) if

you would like to vote

2 pm: AGM

2:30 pm: Panel of guests who will tell their stories and answer your questions

about their Liberation Treatment experiences.

Saturday, May 28th Best Western Baker Street Inn, 153 Baker Street, Nelson.

Refreshments will be served…

Please RSVP!!!

If you would like to attend and/or participate in the panel presentation

please email Lonnie at

info.westkootenay@mssociety.ca

AGM...

Show your support with a Banner Ad in

The West Kootenay Contact

The newsletter of the West Kootenay Chapter of the MS Society of Canada

1 year, 6 editions $175

Contact Leona at leona.dimock@mssociety.ca

THE CLUMSY COOK Shannon Jones

Well they say April showers bring May flowers. Cross

your fingers!! This wacky weather has me turning on

my heat and wanting hot home-cooked meals. So give

these recipes a try. Both are wonderful for potlucks or

a crowd of friends and family. J

STROGANOFF MEATBALLS

Great for company or freeze half for another easy

tasty meal!

2 lbs extra-lean ground beef or buffalo

1 cup dry breadcrumbs

1 cup water

2 tsp salt

½ tsp pepper

2 cups water (substitute some 'mushroom water'

from can of mushrooms)

1 medium onion, finely chopped

¼ cup reduced-sodium beef bouillon powder

1 tsp salt

¼ tsp pepper

¼ cup cornstarch

¼ cup water

10 oz can sliced mushrooms, drained (use this

liquid for extra flavour instead of part of the water

in above step)

10 oz can half-fat condensed cream of mushroom

soup

2 tsp parsley flakes

1/2 tsp paprika

2 cups fat-free sour cream

In a large bowl, mix beef, crumbs, first amount of

water, salt and pepper. Shape into 40 meatballs

and place on cookie sheet with sides. Bake at

425°F for 15 minutes. Dump cooked meatballs

into a large casserole dish.

In a medium saucepan, combine second amount

of water, onion, soup powder and second amount

of salt and pepper. Bring to a boil.

In a small bowl, combine cornstarch and third

amount of water. Pour into boiling liquid, stirring

constantly until thickened.

Stir in mushrooms, soup, parsley, paprika and

sour cream. If too thick, stir in a bit of water.

Pour over meatballs. Cover. Bake at 350°F for 30

minutes. Serves 6 to 8.

OVEN CHOW MIEN

FOR A CROWD

A good friend gave me this recipe and I just love how

simple and tasty it is!

16 cups fresh bean sprouts, rinsed

4 skinless, boneless chicken breast halves (4 oz

each), cooked and sliced into thin strips

4 cans (284 ml each) pieces and stems

mushrooms

1 whole celery bunch (12 to 14 stalks), chopped

2 whole bunches green onions, chopped

2 packages Farkay Chinese Noodles

1 can sliced water chestnuts

2 to 3 cups low-fat low-sodium chicken broth

½ cup low-sodium soya sauce

Layer sprouts, chicken, mushrooms, celery, green

onions, noodles and water chestnuts in oven proof

roaster with good fitting lid.

Stir together soya sauce and 2 cups broth. Pour over

noodle mixture.

Bake at 300°F for 30 minutes, stirring thoroughly

every 10 minutes. Add remaining broth if too dry.

Noodles should be soft and veggies tender crisp.

Serves 8 to 10. This recipe is easily cut in half.

New insight into link between sunlight and MS New research indicates that MS patients with the highest vitamin D3

supplies (mainly derived from exposure to sunlight) had the fewest

attacks and slowest disease progression. Dr. Colleen Hayes from the

University of Wisconsin-Madison and lead author states: "MS is a

genetically and immunologically complex disease. It is currently

incurable, but environmental factors, such as vitamin D3, may hold the

key to preventing MS and reducing the impact of the disease in MS

patients."

Dr Hayes' team had initially suggested that the sunlight dependent

hormone D3 might restrain the autoimmune attacks that cause MS.

This thinking was based on the strong negative relationship between

sunlight exposure and MS prevalence, the need for UV light to catalyze

vitamin D3 formation, and the presence of receptors for the vitamin D3 hormone in T lymphocytes.

As a result the team proposed that the vitamin D3 hormone might act on these receptors to control

the T lymphocytes responsible for autoimmune attacks.

"Our new study investigated the protective effects of the vitamin D3 hormone in an experimental

model of MS when the hormone receptor was either present or absent in T lymphocytes. We found

that the hormone's protective effects were only evident when these receptors were present in

autoimmune T lymphocytes. Our new data suggest that an action of the vitamin D3 hormone directly

on pathogenic T cells leads to elimination of these cells," said Hayes. Actions of the vitamin D3

hormone on other immune cells have not been ruled out, but such actions were not sufficient for

protection from autoimmunity if the hormone could not act on the pathogenic T cells. This

information is important because it provides a plausible biological explanation for the negative

correlation between UV light exposure and MS disease risk and severity," concluded Hayes. "My

research group and others around the world are building the scientific knowledge base needed to

devise vitamin D-based strategies to prevent and treat MS" she added. "There are many

uncertainties and unanswered questions. However, understanding how sunlight and vitamin D3 may be

working at the molecular level contributes greatly to our knowledge base and brings us closer to the

goal of preventing this debilitating disease."

Currently the expensive first-line treatments for MS offer some reduction in the frequency of

autoimmune attacks but don't slow down the progression of MS. Second-line treatments for MS are

even more expensive and while they do slow disease progression they carry high risks. This research

adds to the evidence which suggests that increasing vitamin D3 levels could possibly be a safe,

effective and inexpensive therapy for MS.

References / Source:

This article is adapted from Wiley - Blackwell (2011, March 3). How sunlight may reduce the severity

of multiple sclerosis. ScienceDaily. Retrieved April 3, 2011, from http://www.sciencedaily.com­ /

releases/2011/03/110303065335.htm, which was based on Christopher G. Mayne, Justin A. Spanier,

Lance M. Relland, Calvin B. Williams, Colleen E. Hayes. 1,25-Dihydroxyvitamin D3 acts directly on the

T lymphocyte vitamin D receptor to inhibit experimental autoimmune encephalomyelitis. European

Journal of Immunology, 2011; 41 (3): 822 DOI: 10.1002/eji.201040632

poorly than non-users in the cognitive functioning skills mentioned above, the cannabis users were also twice as likely as non-users to be classified as globally cognitively impaired. There were no differences in psychiatric diagnoses for depression and anxiety. “Given that about 40 to 60 per cent of MS patients have problems with cognitive function to begin with, any drug that may add to this burden is cause for concern,” adds Dr. Feinstein, also a professor of Psychiatry at University of Toronto. Past cannabis research in MS patients has largely focused on synthetic derivatives of the drug; less attention has focused on inhaled ‘street’ cannabis. The clinical trials literature is small and suggests treatment may have some mildly beneficial effects in relieving pain, spasticity problems, insomnia, bladder problems, tremors, and emotional distress. The benefits reported are subjective however and need to be weighed with the potentially adverse cognitive effects. More research is needed to replicate these findings in a larger sample. This study was supported by the MS Society of Canada and by research support for MS trials from the pharmaceutical industry. About Sunnybrook Health Sciences Centre Sunnybrook Health Sciences Centre is inventing the future of health care for the 1 million patients the hospital care for each year through the dedication of its more than 10,000 staff, physicians and volunteers. An internationally recognized leader in research and education and a full affiliation with the University of Toronto distinguishes Sunnybrook as one of Canada’s premier academic health sciences centres. Sunnybrook specializes in caring for Canada’s war veterans, high-risk pregnancies, critically ill newborns, adults and the elderly, and treating and preventing cancer, cardiovascular disease, brain disorders, orthopaedic and arthritic conditions and traumatic injuries.

Toronto, ON (March 28, 2011) – New research proves that prolonged use of cannabis in Multiple Sclerosis (MS) patients results in even poorer performance on cognitive (intellectual) skills already affected by MS. “MS is a disease that affects the brain and is associated with cognitive deterioration as it is. Prolonged inhaled or ingested (‘street’) cannabis use is shown to significantly worsen one’s attention span, speed of thinking and processing information, working memory, executive functions and visuospatial skills,” says Dr. Anthony Feinstein, lead investigator of the study and neuropsychiatrist at Sunnybrook Health Sciences Centre. “What this tells us is that MS patients need to be made aware of these effects on personal, social and occupational functioning, and weigh whatever benefits with the very real cognitive side effects they will likely experience from long-term cannabis use.” The study is published in the March 29 2011 issue of Neurology, the medical journal of the American Academy of Neurology. Two groups of MS patients – 25 cannabis users and 25 non-users – were both tested using various cognitive skills testing including neuropsychological tests and interviews, as well as a psychiatric anxiety and depression scale. Patients between the ages of 18 to 65 with confirmed MS were recruited from MS clinics affiliated with the University of Toronto. The average duration of marijuana use was 26 years. A total of 72 percent of users reported smoking marijuana on a daily basis while 24 percent reported weekly use and one person reported bi-weekly use.

In addition to performing significantly more

Marijuana worsens MS brain deterioration

Do you have questions about MS and are you unsure of where to go for answers? Do you have concerns about family issues, complementary medicine, or MS symptoms and their management? Whatever your area of interest, at Ask the Expert you have the opportunity of connecting with top health professionals and researchers in the MS field. Our experts are here to answer your MS-related questions. Go to www.msanswers.ca to ask a question or read about what other people have asked.

Q : My father has been living with MS for 10 years and is noticeably disabled. I have recently been diagnosed and I am concerned about how to explain it to my 4 year old and 2 year old. The 4 year old understands that mommy is sick, but I do not want him to associate it with how sick Papa is. How do I explain all of this to him without scaring him even more than he already is? Would it be best simply not name it for now and let them grow into the understanding when they are older that mommy and Papa have the same thing? A : You mention that your 4-year-old knows that ―mommy is sick,‖ but you didn’t describe what kinds of symptoms you’re having at this time. In order to help your kids understand what’s going on without scaring them unnecessarily, I would recommend the following strategies: • First, remember that your two children probably have very different needs at this time. Although your 4-year-old may have some questions and worries about your health, your 2-year-old may not be interested in any of this for a while yet. So I would start by talking with your older child first, and then have separate conversations with your younger one as he or she begins to ask questions or show concerns.

• Rather than talking with your kids about being ―sick,‖ explain any symptoms or problems you are having that they can see or that interfere with your daily activities, and describe what you are doing to try and make them better. For example, if fatigue is your primary problem, you might explain that you get very tired sometimes and need to rest more than you used to. If you’re having trouble with your vision right now, you could describe how your vision is affected and that you’re taking medication or wearing an eye patch or reading large print books until it gets better. If you’re having difficulty walking, you could explain that your leg isn’t feeling very strong right now and the cane is helping you keep your balance. By talking about specific challenges and the strategies you are using to manage them, you will limit your children’s fears and reassure them that you’re taking good care of yourself. • Let the kids know that you have MS like Papa, but that everyone’s MS is different. If you don’t share this information with them, you run the risk that they will hear it from someone else—and it’s always better and more reassuring for children to hear important information from mom or dad. Since all children worry when a parent becomes ill or disabled, you can also reassure them that you’ll always love and take care of them. • While it’s important to answer your children’s questions openly and honestly, there’s no rea-son to overwhelm them with too much

information at any one time. Be prepared to start simply and add more detail as they grow older

and their questions become more complex.

Check out the available resources for children on the next page:

Resources for Children

MS Society of Canada Resources: • Parenting with Multiple Sclerosis: How parents with MS – and their kids – adapt and get stronger. • How to Talk about MS with Your Children: This guide is a practical aid to help parents communicate better with their children about multiple sclerosis. • Keep S'myelin, a resource for children of parents with MS, is a colourful activity book intended to help children find answers to questions about multiple sclerosis and talk with their family and friends about the changes MS can bring. • Keep Your Balance! is a colourful publication for teens which includes basic information about MS and testimonies from teens who have a parent with MS. • My Mommy has MS This booklet for pre-school children describes MS and its effects in an easy to understand manner. • Benjamin: My Mum is Special This publication provides a view of MS through the eyes of a child struggling to understand his mother's mysterious and sometimes frightening illness. National MS Society resources: • My Grampy Can’t Walk – a colorful storybook for young children by Vanita Oelschlager. • Timmy’s Journey—a DVD cartoon suitable for all ages that shares a little boy’s adventure learning about MS (available upon request from Kimberly Koch at kimberly.koch@nmss.org)

DISCLAIMER: Please be aware that this information does not necessarily represent the opinion of the MS Society of Canada, and is not intended as medical advice. For specific advice and opinion, always con-sult a physician.

NEW

NELSON DROP-IN CENTRE FOR OUR

MEMBERS!

The Re-source Cen-ter in Nelson is officially open and Lonnie will be available there every Wednesday

from 10 am till 1 pm if you’d like to drop by for a chat. Call 1-866-352-3997 if you’d like to book a private appointment or to confirm that she is in. The Re-source Center is a large space donated by the Com-munity First Health Coop and shared by several health charities. They are looking for volunteers to work 3 hour shifts. If you’re interested, call Lora, the Volunteer Coordinator, at 250-352-3225.

Acting Mayor, Deb Kozak, and Columbia Basin

Trust rep, Aimee Ambrosone, cut the ribbon to

officially open the Community Health Resource

Center!

Left: Remedy’s RX Green

Team gathered for a group

shot just before heading out

to Walk their Walk!

Below: Children’s Entertainer,

Dennis Leugner, and Otter Be

Fit hammed it up for the kids.

Board Chair, Dan Carlson, cuts

the cake, donated by the Bridge

Radio Station.

All Walk photos thanks

to volunteer, Oktay

Gurbuz

Our 2011

Scotiabank

Walk for MS

in Nelson

Our top Trail fundraiser, Alison Worsfold (middle)

Thanks to Josh Leeworthy, Positive

Vibes and the Rhythm Ropers (some pic-

tured here) for providing our entertain-

ment for the event!

Above, Team Scotia and a Princess

Below: Got Milk? Thanks to our sponsor, Island

Farms for the snacks!

A great day to walk in doors! Trail’s event was

held in the Cominco Gym this year because it was

so early in April. Thanks TRAIL, for your

continued support of our Chapter!!

Our 2011 Scotiabank Walk for MS in Trail

Multiple Sclerosis Symptoms Prevented in Mouse Model by

Barring Immune Cells from Brain

New insights into how the brain regulates immune cell entry

allowed researchers from Washington University School of

Medicine in St. Louis to block an MS-like illness in mice. MS is believed to be caused

by misdirected immune cells that enter the brain and damage myelin, the insulating

material on the branches of neurons that conduct nerve impulses. The Washington

University scientists had borrowed an anti-cancer drug in development by the

company ChemoCentryx in order to test their theories related to the importance of

barring immune cells from entering the brain. According to Robyn Klein, MD, PhD,

associate professor of pathology and immunology, of medicine and of neurobiology.

"The results were so dramatic that we ended up producing early evidence that this

compound might be helpful as a drug for MS" . She further stated: "The harmful

immune cells were unable to gain access to the brain tissue, and the mice that

received the highest dosage were protected from disease."

Klein and her colleagues discovered that immune cells need to climb down a chemical

stairway in order to enter the brain. The stairway is found on the tissue side of the

tiny vessels that carry blood into the central nervous system, known as the

microvasculature. Immune cells that exit the blood stay along the vessels on the

tissue side, climbing down from the meninges into the brain where they are able

to then cross further barriers and attack myelin on the neuron's branches. "The

effect of immune cell entry into the brain depends on context," Klein reports. "In

the case of viral infection, immune cell entry is required to clear the virus. But in

autoimmune diseases like multiple sclerosis, their entry is associated with damage so

we need to find ways to keep them out."

The "steps" of the staircase are made of a molecule that localizes immune cells

(CXL12), which slow down the cells so that they can be evaluated to determine if

they are permitted to enter the brain. Klein also found that MS causes these immune

-cell localizing molecules to be pulled into the blood vessels of mice and humans,

thereby removing the steps of the staircase and the evaluative protective check-

points these steps provide. In her research, Klein demonstrated that blocking the

vessel's internalization of the molecule stopped the immune cells from getting into

the brain and doing damage.

Continued next page...

Work by other researchers directed Klein's attention to a receptor that that binds

to CXCL12, called CXCR7. Klein contacted researchers at ChemoCentryx, who were

developing a way to block the CXCR7 receptor as a cancer treatment. When they

introduced that blocker to the mouse model of MS, immune cells stopped at the

meninges. "One of the biggest questions in MS has been why the location, severity and

progression of disease varies so much from patient to patient," says Klein. "Getting a

better understanding of how these factors regulate immune cell entry will be an

important part of answering that question."

The study is published in the Journal of Experimental Medicine. ChemoCentryx is now

testing the drug in Phase I safety trials.

References / Source:

This article is adapted from Washington University School of Medicine in St. Louis

(2011, March 7). Multiple sclerosis blocked in mouse model: Barring immune cells from

brain prevents symptoms. ScienceDaily. Retrieved April 3, 2011, from http://

www.sciencedaily.com­ /releases/2011/03/110307103652.htm, based on story reprint-

ed from materials provided by Washington University School of Medicine in St. Louis.

The original article was written by Michael C. Purdy.

West Kootenay Chapter Exercise Program!

The Board of Directors of our Chapter feel that exercise is one of the best things a

person can do to stay healthy. We also understand that it is not always affordable.

That is why we’ve created a local program to subsidize your choice for exercise – gym pass-

es or memberships, swimming, yoga, tai chi, purchase of equipment, etc.

Contact the West Kootenay Chapter

office at 1-866-352-3997

You and your unpaid, live-in caregiver (e.g. spouse, sibling, parent, child) may be eligible

for up to $250 in subsidies so call for more information!

Phone: 1-866-352-3997 (toll free)

Fax: 250-229-4994

E-mail: info.westkootenay@mssociety.ca

Lonnie Facchina

Community Services Coordinator

lonnie.facchina@mssociety.ca

Leona Dimock

Fundraising Coordinator

leona.dimock@mssociety.ca

250-354-4670

Dan Carlson

Chapter Chair

dan_carlson@shaw.ca

250-352-9344

Printed and Distributed by

622 Front Street, Nelson, BC V1l 4B7 Tel: 250-354-1299

The West Kootenay Chapter acknowledges the

financial assistance of the Province of BC in

producing our newsletter.

Our Mission: To be a leader in finding a

cure for multiple sclerosis and enabling

people affected by MS to enhance their

quality of life.

Find us online at www.mssociety.ca

WEST KOOTENAY CHAPTER

MS SOCIETY OF CANADA

Box 202 Balfour BC V0G 1C0