The Myasthenia Gravis Association of BCcordially invites you to attend

THE ANNUAL GENERAL MEETING

When: Sunday, April 13th, 2014 at 1:30 pmWhere: Room 307, Centre for Ability, 2805 Kingsway, Vancouver

Speaker: Dr. Ben Patchell, PhDScientific Development Manager, Department of Medical Affairs, Grifols Canada Inc

Topic: Intravenous Immunoglobulins in the Treatment ofMyasthenia Gravis: Frequently Asked Questions

Refreshments will be served.Friends, relatives, health professionals and other interested

parties are welcome to attend.

For further information, please contactBrenda Kelsey or Linda Briggs at 604-451-5511 (1284)

or email: mgabc@centreforability.bc.ca

AGM: Elections for Board of Directors.If you are interested in becoming a Board Member,

please call either Brenda or Linda.

MG NEWSLETTERMyasthenia Gravis Association of British Columbia

2805 Kingsway, Vancouver BC V5R 5H9 ∙ Tel 604-451-5511 ext.1284 ∙ Fax 604-451-5651E-mail: mgabc@centreforability.bc.ca ● Web site: www.myastheniagravis.ca

June is MG Awareness Month AGAIN!And in celebration, the Myasthenia Gravis Association is asking patients, friends

and family to participate in the Scotiabank Group Charity Challenge, June 22nd. There are opportunities to pledge on-line as well as mail in pledge sheets. We

have included a pledge sheet for your convenience. For additional race information, please visit www.canadarunningseries.com/

svhmCHARITY.html

Articles contained in this newsletter are for information only. The MG Association of BC does not give medical advice. In matters of medical treatment, patients should consult their physicians.

*Newsletter and meeting supported by an unrestricted educational grant from Grifols Canada Inc.

The Myasthenia Gravis Association of BCANNUAL GENERAL MEETING

MYASTHENIA GRAVISASSOCIATION OF BC

Spring2014...

It’s finally here!

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MG NEWSLETTER

At the beginning of every year all non profit societies must submit financial information, current activities, projects and information about their Board of Directors to provincial and federal governments. This takes alot of time and thought, but it also brings to mind all that the MGABC has accomplished during the year. Firstly, I would like to thank Linda Briggs, our V.P. and Treasurer without whom nothing would be accomplished. Linda takes care of all memberships and membership cards, donation receipts and pays all our bills. It is a big job and without her expertise, we would achieve very little.

Every February, we ask the provincial government to name June as “Myasthenia Gravis Awareness Month”. This was granted and in time to allow us to start preparations for the largest fund raiser of the year, the ScotiaBank Charity Challenge on June 22nd. In May we started fund raising efforts by sending out letters and pledge forms to all of our members in order for them to start gathering pledges.

We are grateful to Barb McDonald for taking over responsibiltiy for this major fundraiser. Barb navigates a complicated web site, organizes volunteers for the booth, arrives early to set up and then participates in the event. Thank you to all who participated in the walk/run in 2013, especially Mary and Ian Rose, who raised over $ 10,000.00 for MGABC.

In June, Dr. Oger submitted a proposal to MGABC to ask us to support the use and developement of an “immunibiosensor platform for the rapid detection of the musk antibody”.Before Dr. Oger obtained the platform, the musk tests were done in England and took 4 to 6 weeks for results. In Dr Oger’s lab at UBC, the tests can be done in an hour. As we had raised a substantial amount of money due to the ScotiaChallenge, we were able to give Dr. Oger $ 15, 000.00. Dr. Oger was very grateful for our financial support. In July, Linda Briggs, Andrew Dawes and myself went to Dr. Oger’s lab and presented him with a cheque. We were given a demonstration of the platform. In October, Dr Oger attended our board meeting and informed us he is retiring at the end of 2014. He is naturally very keen to keep the neuro-immunology lab at UBC working on MG research and diagnostics. He made an appeal to us to help maintain the lab when he retired. After some discussion the board agreed to support the lab to the best of our ability, though we could not pledge a specific amount at this time.

In November our very good friend and retired board member Jack Munro passed away. As Jack had been a patient of Dr. Oger’s, the board decided that any memorial donations received in Jack’s name would be directed towards a memorial fund for research called “The Jack Munro Memorial Fund” These monies would be directed to maintaining MG research at the neuro-immunology lab at UBC. It appears the MGABC can take great pride in its many achievements in 2013.

I would like to thank the Board for their continued help and support, especially David Sutherland - who helps set up the meeting room and phoning members. Angie Kwok - Director of the Centre of Ability and her staff for their unfailing cheerful advice and help. To Sheila McWIlliams and Yvonne Elliott, my friends who come and help out at the AGM with registration and refreshments. And last but not least, to all of the members of the MGABC for your continued support with memberships, donations and attendence at our meetings.

Respectively Submitted,

Brenda Kelsey President

ANNUAL REPORT of the MYASTHENIA GRAVIS ASSOCIATIONof British Columbia, 2013

Spring 2014

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From the MG Network…

A number of research studies related to myasthenia gravis are currentlyunderway. The Muscular Dystrophy Association is sponsoring a study led by David Richman MD at the University of California Davis, that examines the anti-MuSK myasthenia form of MG. MDA also has awarded a grant toMuthusamy Thiruppathi, a postdoctoral research associate in microbiology and immunology in the College of Medicine at the University of Ilinois atChicago. His research pursues ways to restore normal immune system function in myasthenia gravis.

Source: http://mda.org/quest/mg-can-immune-respose-be-tamed

A pilot study led by Ghazala Hayat, MD at St. Louis University is among those listed at www.ClinicalTrails.gov. The site states, “ A common treatment for patients with this disease includes the administration of intravenousimmunogloblin (IVIG), which is a plasma protein that is given to help maintain adequate antibody levels to prevent infections and decrease the symptoms of the disease. This study is being done to test if giving this medication in the subcutaneous form ( into the fat of the abdomen, legs and thighs) will bebetter tolerated by MG patients. “ Study participants are trained to givethemselves the infusion at home.

If you scratch adog or a cat...

...you will havea job for life .

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MG NEWSLETTER

This year we raised more money than we have in previous all together because of your continued commitment and new members who rose to the occasion. Rose is an apt descripton of the effort of our newest member Ian Rose and his wife Mary, who collectively raised more than $10,000.00.The day was once again warm and sunny, allowing the many spectators,volunteers, runners and walkers to enjoy the day.

June has once again been recognized as MYASTHENIA GRAVIS AWARENESS MONTH! Help us help all of you by donating on-line at the race website or by mailing in your pledge form.

More Sun for the RUN - Sunday, June 23, 2013

Val Fair (L), Spencer Fair, Trevor Harris, Melissa Harris, Lucas Fair and Dave Fair - all family members of our member Jim Harris !

For additional raceinformation and in order to

make donations online, please visit

www.canadarunningseries.com/svhmCHARITY.html

New Brochures and ID cards are now available ! Check out the Literature Order sheet on page 7 for new brochures that may help you, your family and your health care practitioner. One new brochure outlines the drugs to avoid in MG. This is a brief guide for patients, doctors and dentists. The MG Support Group recommends that myasthen-ics discuss this pamphlet with their practitioner and pharmacist, as MG is a disease in which it is particularly important to have individual treatment.New ID cards are also available which have a brief list of drugs to avoid and emergency contact information. All brochures and cards are free of charge to MGABC members. Use the Literature Order sheet to order yours - ID cards are item # 26.

Spring 2014

“The Jack Munro Memorial Fund” Donations

Lonsdale Garden Club Dr. and Andrea Soong Heidi HolmerPaul Moist Lorene Oikawa Doris LunnDeb MacPhee Concert Properties Stephen HeeneyBrenda and Len Kelsey Construction and Specialized Workers Union Local No. 1611

Remember that donations made to The Jack Munro Memorial Fund should be sent to the Myasthenia Gravis office and will fund UBC research.

Working People: A History of Labour in B.C.

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When Jack Munro was the Chair of the Labour Heritage Centre, he conceived of an idea to make movies of the history of the working people in BC. He took the idea to Rudy Buttignol, President and CEO of Knowledge Network and together they raised the necessary funds and support to make it happen. The vignettes are a significant tribute to the role of working men and women in BC. They highlight the various struggles and achievements that working people experienced as they worked together to better their lives and the lives of others as they built this great province.

The vignettes - 30 in all - have been divided into three sections, each about a half hour long.

Section 1 will air on: Thursday - March 20, 2014 at 7:30 and 11:30 pm Friday - March 21, 2014 at 6:30 pm Sunday - March 23, 2014 at 2:30 and 6:30 pm.

Section 2 will air at the same the following week starting Thursday, March 27th and the final Section will air the next Thursday, Friday and Sunday starting April 3, 2014

The vignettes stand as a tribute to all working people in BC. The are also indicative of the work of Jack Munro, who in his retirement years continued to dedicate himself to ensuring that the contributions of working people were properly recognized.

MG NEWSLETTER Donations

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DONATIONS AS OF MARCH 2014 and since last publication

Gayle Wilson D. Symons Lorna AndrewsKen W Moore Yvonne Lyle Bobbi Gordon R. Lefeaux Allan Thorp Ken W MooreDon Berkeley Mark Revell Thelma Abma Grace Deroche G. Kradepohl Carol McBrydeMarge&John Phillips Mark Anderson T. CallanderEdith & Edgar Lublow Elisabeth Sephton Terry Miller Pauline Buckley Mary Gilholme Ed GoreRobert Magi Jane Bryans Nancy HeadleyRoseanna Bremmer W. Van Linden Tol Tim MarchKen Porterfield Doreene Kerr Jerry OlynykNadia Anderson Marsha Tillman M. PatersonJeff Greb Olive Worsfold W. MacfarlaneLois Ngai Kelly Carson Rose JonesLavinia Lo Ian Folkers J. CloggR. Douglas Reid S. Trimble W. DavenportE. Bisschop V. Cotten W.DeRoseY. Elliott Marion Garbutt W. GoddenBart McGuire Nora Moore Maybelle MorrisonThomas Noiles Kathy Chatten Leslie AllenCarol Klassen J. Espinosa K.C. Moore Al Craig R. Douglas Dr O. Huhn D. Hogbin Stephanie Musso Rose Pickard Eldon Whitecotton Joanne Mirabelli Barb Thomas Ken Palmer J. Postnikoff Ed Zatorski L. Stafford Jantine Van Oort Annie MacKinnon

In Memory of

K. Winslade for Verda Langlois Stephen Olliver for Janet OlliverPatricia Kradepohl and the Lethbridge Family Services for Lydia Martinelli

CORPORATE : UNITED WAY: Thompson Nicola Caribou UNITED WAY: Alberta Capital Region TELUS CARES: Dave Sutherland and Rose Hare

MG RESEARCH DONATIONS to Dr OGER at the University of B.C.Dr Joel Oger, Judy Codrington, K. Winslade, Nicole Tessier

Myasthenia Gravis Association of B.C - In Memory of Fred Taylor, Brenda Kelsey (monthly donation)

Donations are current as of March 2014. We apologize for any errors or omissions. These do not include ScotiaCharity Challenge pledges due to space limitations.

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Spring 2014LITERATURE ORDER

Name_______________________________________________________________________

Address_____________________________________________________________________

LITERATURE AVAILABLE:

o 1. Myasthenia Gravis Factso 3. Survival Guideo 6. M.G. 101 - Comprehensive information on MG from history to up-to-date treatmento 7. Drug pamphlets:

___(a)Mestinon; ___(b)Imuran; ___(c)Prednisone; ___(d)Cyclosporine; ___(e)Cellcepto 8. Drugs that may aggravate MG NEW 2012*o 9. Thymectomy pamphleto 10. Plasmapheresis pamphleto 11. Intravenous Gamma Globulin (IVIg) for the treatment of Myasthenia Graviso 12. Ocular Myasthenia Graviso 13. Fresnel Prism to correct double visiono 15. Dentistry and the Myasthenico 16. Pregnancy and Myasthenia Graviso 17. Myasthenia Gravis in Children & Adolescence with MG NEW*o 18. School Package for Children with Myasthenia Graviso 19. Caring for Children & Adolescents o 20. Emergency Care of Myasthenia Graviso 21. Mestinon Under the Tongue - A possible emergency measureo 22. Assessment & Management of Speech & Swallowing in Myasthenia Graviso 23. Hospital Package: Nursing Care of the Myasthenic; Hospitals Can be Dangerous;

Anesthesiology Drugso 24. Alternate Therapies - Vitamins, minerals, herbs, & other supplements; MG & mercury

amalgamo 25. Medic Alert Applicationo 26. MG ID/Emergency Alert Card NEW* o 27. Tips on Applying for CCP Disability Benefitso 27 A. Advocacy Access Help Sheeto 28. A Practical Guide to Myasthenia Gravis by Keesey & Sonshine Excellent Booklet!o 29. Providing Emotional Support for a Relative with MG o 30. Disability Tax Credit - Form T2201 or download forms at www.cra-arc.gc.ca/E/pbg/tf/t2201

BOOKS AVAILABLE:o You, Me and MG by Deborah Cavel-Greant, published 2005 ($20.00 from MGABC)o A Guide to the Diagnosis and Management of Myasthenia Gravis by Dr. Joel Oger,

published 2008 - FREE OF CHARGE TO FAMILY PHYSICIANS of MG memberso Commitment to Health by Jerry Olynyk (Loan only. Not available for purchase.)

Please note: General Myasthenia Gravis information is now available in Mandarin, French and Spanish. If you would like a copy, please contact our offices.

MG NEWSLETTERMEMBERSHIP and DONATIONS

MGABC’s $10 membership is valid Jan. 1st to Dec. 31st. Any membership received after Oct. 1st will be good for the following year. To make a donation, complete the form below and return it with your cheque or money

order (we cannot accept credit card payments). Please do not send cash in the mail.Your donation and membership fees help defray operating costs, and entitles you to the following:

Newsletters bi-annually...MG literature and pamphlets...Notice of meetings...Up-to-date information on MG

If you are no longer interested in receiving our mailings, or would like to receive them by e-mail, please send your request to us at mgabc@centreforability.bc.ca

with the words “E-mail request” in the subject line. Thank you.

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You Can Help!Your support can make a vital difference. Please donate to Myasthenia Gravis Research at UBC.

Online: www.supporting.ubc.ca/mg Phone: 1-877-717-GIVE (4483)By mail: Myasthenia Gravis Research, UBC Annual Giving, 500-5950 University Blvd

Vancouver, BC V6T 1Z3*If you are donating directly to UBC, please let us know so we may include your name in the RESEARCH DONOR list.

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Spring 2014

Make Cheque payable to: MYASTHENIA GRAVIS ASSOCIATION of BCMail your cheque to: Myasthenia Gravis Association of BC

2805 Kingsway, Vancouver, BC V5R 5H9

Last Name_______________________________________First Name___________________________________

Address____________________________________________________________________________________

City________________________________Prov.___________________________Postal Code____________

Phone_________________________________ MG Patient Yes No

Membership ($10.00) $___________________ (no tax receipt will be issued)

Donation $___________________ (a tax receipt will be issued for donations)

TOTAL AMOUNT ENCLOSED $___________________

Last Name_______________________________________First Name__________________________________

Address____________________________________________________________________________________

City________________________________Prov.___________________________Postal Code______________

Phone_________________________________

Have you moved? Please send in the information as soon as possible!

DONATIONS to MG RESEARCH

(note new account name)UBC Myasthenia Gravis Research Account

mail to: Dr. Joel Oger, Director of MG Research c/o Myastenia Gravis Association of BC 2805 Kingsway, Vancouver, BC V5R 5H9

If you are no longer interested in receiving our mailings, please notify the MGABC

E-mail______________________________________________