KEEPING IN TOUCH WITH THE NORTHUMBERLAND CHAPTER MS SOCIETY

Transcription

1 KEEPING IN TOUCH WITH THE NORTHUMBERLAND CHAPTER MS SOCIETY September October 2012 September 24, 2012 Meeting, 10:00 a.m. Columbus Community Centre, 232 Spencer St.E., Cobourg Speaker Cathy Edgar, Kingston MS Clinic Join us ********* October 29, 2012 Meeting, 10:00 a.m. >Get caught up on what happened over the summer. >Hear about the MS Society Renewal Process >Order Christmas cakes/cookies >Renew membership ***** LISTENING TO PEOPLE AFFECTED BY MS - a survey to come fall 2012 from the MS Society - on the MS website, on-line or by paper or telephone focus groups - on-line poll ***** RESEARCH PORTAL Hear about research projects looking for participants on the MS website mssociety.ca ******* GIANT THANK YOU To all those volunteers who helped with The Walk, Carnation, The Raffles, Meetings and all else!!! 1

2 Don t forget We meet monthly at the Columbus Community Centre, 232 Spencer St.E., Cobourg, Last Monday of the month at 10:00 a.m. ************ SWIM FOR INDEPENDENCE at the Port Hope Complex Jack Burger. Call to confirm times. Bring a friend or helper if you need assistance. ******** VOLUNTEERS As you know this chapter is run entirely by volunteers. We have tremendous support from many people for all the fund raising efforts Carnation, the MS Walk and the other projects which we undertake from time to time. EXECUTIVE Co-chair, Fundraising Rae MacCulloch, Treasurer Christine Bayer Client Services/Co-Chair Marilyn Marsh Secretary Elizabeth Gibbs ( Liz) Historian & Ann Turner Member at Large Research Advocate Beth Osmond Social Action Jerry Ford Assistant Research Rachel MacCulloch Advocate *********** CLIENT SERVICES Funding assistance is available for members with MS through Special Assistance for help with cleaning, transportation, alarm systems, etc.; through the Equipment program covering wheel chairs, bathroom items, beds, lifts, etc. This for services and equipment not available through other community programs. Drugs are not covered. The process involves an application completed by the member and their health care professional, along with a written assessment and estimates/quotes for the services required. For further information contact: Marilyn Marsh at , fax Make contact before purchase. We do not pay after the fact. 2

3 INFORMATION RECEIVED if you are interested please call for a copy. February 29, 2012 Biogen Idec applies to FDA for approval of oral BG-12 to treat MS. March 13, 2012 Women s risk for developing clinically isolated syndrome (CIS) was shown to decrease with increased number of pregnancies. April 12, 2012 Fampyra now available for prescription in Canada. April 13, 2012 A case of progressive multifocal leucoencephalopathy (PML) has been reported in an individual being treated with fingolimod ( Gilenya). May 10, 2012 FDA issues safety communication about CCSVI and MS. May 18, 2012 US Food & Drug Administration revises recommendations for cardiac monitoring & use of Gilenya. May 24, 2012 Latest results about emerging MS therapies, risk factors, disease mechanisms, rehab, CCSVI & much from the AAN Meeting American Academy of Neurology. May 24, 2012 Small study reports benefit of cannabis on MS spasticity. May 24, 2012 Health Canada approves updates tp Tysabri product monograph to include Anti-JC virus antibody status. June 25, 2012 Cancer risk in MS: Findings from a UBC study. July 3, 2012 Study assesses safety & efficacy of Botox for management of tremor. July 17, 2012 UBC Study investigates the association between interferon beta therapy & disability progression in relapsing-remitting MS. July 23,

4 Phase 11 trial shows promising results for Mastinib for progressive MS. July 24, 2012 FDA warning about the risk of seizures with MS drug fampridine/fampyra. July 24, 2012 Health Canada & Novartis Pharma revise Gilenya label. July 25, 2012 UBC study observes natural improvement in MS related disability. August 7, 2012 Preliminary results of a new class of oral drug that targets inflammation in neurodegenerative conditions reported. August 22, 2012 Low dose Ampyra does not improve walking speed in MS: results from a post-marketing study in US. August 24, 2012 Gilenya product monograph update. Sept. 24, 2012 Researchers continue with their progress in the seven funded CCSVI studies in MS *************** HEADS UP BATTERIES AVAIIABLE: > also sell scooters Clarington Battery - # Baseline Rd. W., Bowmanville Branch: Quinte Battery -220 Adam St., Unit 9, Belleville ***** RAFFLE Our second 50/50 draw was held July 11. Winner Christian Nardi, Thornhill was presented with a cheque for $ Look for our next raffle in December, tickets available soon. 4

5 ART DE TRIOMPHE - New Outreach Program Member driven not for profit organization looking for potential participants. Check out the website to see what persons with disabilities can do. We are looking for disabled persons who need encouragement to come back into active living and would like to explore their creative potential. No prior experience or demonstrated skills are required, just a willingness to try some form of artistic expression. No cost. Some of our artists and volunteers will be involved with teaching and mentoring. Contact Jerry Ford at jford@eagle.ca or at ******* IM MEMORIAM Condolences to the family of Hazel Smith who died June 4, 2012 in Cobourg Condolences to the family of Charles Morin who died June 23, 2012 in Campbellford. Condolences to Marilyn and John Marsh whose youngest granddaughter Emma Purdie, 20 died tragically July 13, ********* MISSION To be a leader in finding a cure for multiple sclerosis and enabling people affected with MS to enhance their quality of life. 5

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