Summer 2011 - Multiple Sclerosis Society of Canada

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Alberta CCSVI study seeks volunteers A highly-anticipated Alberta MS observational study ready to enrol volunteer participants The Alberta Multiple Sclerosis Initiative (TAMSI) is a 3-year study for people with MS and related conditions, initially focussing on those who have sought interventions for chronic cerebrospinal insufficiency (CCSVI).. The $1 million funding for the study was announced in December 2010 by Gene Zwozdesky, Minister of Health and Wellness. The main immediate goal of the TAMSI study is to determine the safety and patient- reported impact of the various types of treatments which have commonly become known as the “Zamboni treatment” from Albertans who have had one of these types of procedures. “In order to fully understand the benefits of treatment and possible complications of CCSVI as it relates to MS, we need the personal , first-hand accounts of Albertans living with multiple sclerosis,” said Neil Pierce, President, MS Society, Alberta & NWT Division. “The TAMSI study will increase our ability to track people’s treatment experience and advance our knowledge. In fact, I recently heard Dr. Hubbard, a well-respected CCSVI proponent from California, affirm that we need to track the personal 6 MS Connections Summer 2011 testimonials of people who have received the treatment.” Dr. Luanne Metz, from the University of Calgary Hotchkiss Brain Institute, is the principal investigator on the TAMSI “Prospective volunteer participants can visit www.tamsi.ca for further information on the TAMSI study....” study. Dr. Metz is leading a diverse team of researchers from the University of Calgary and University of Alberta, in collaboration with other MS experts from a broad range of backgrounds. “All Albertans with MS, regardless of their treatment plans or experiences with CCSVI interventions, are being encouraged to take part,” said Dr. Metz. “A wide spectrum of MS patients is required in order to adequately compare and evaluate the impacts of the various ‘Zamboni treatments.’” In addition to MS patients, Albertans with suspected MS, optic neuritis, transverse myelitis, Devic’s neuromyelitis optica, or a clinically isolated syndrome (CIS) will also be invited to participate in the TAMSI study. The TAMSI study will look at the safety and patient-reported impact of the range of CCSVI interventions including angioplasty and venous stents, as well as prescribed aftercare plans. Participants who register for the study will be asked to fill out online surveys and permit linkage to their health information. Data from the study will allow researchers and clinicians to gather evidence to describe patient-reported symptom changes, compare any adverse effects that follow different types of CCSVI treatments, and develop after-care guidelines. This information will be very useful in understanding the impact of MS on Albertans, designing future MS research and ultimately improving the lives of people with MS and related conditions. Prospective volunteer participants can visit www.tamsi.ca for further information on the TAMSI study and expectations of participants. MS Corporate Heroes Join The Challenge and Walk, Bike or Golf to End MS! Visit: mssociety.ca/alberta/corporateheroes.htm
Alberta Student A BRIGHT LIGHT Brietta Gerrard’s younger sister was diagnosed with MS at the age of 16. As a result, Brietta wanted to make a difference and started volunteering with the MS Society’s Lethbridge & District Chapter three years ago while attending the University of Lethbridge. She volunteered for monthly bingos and the Enerflex MS Walk. In 2009 and again in 2010, she worked as a summer student for the Lethbridge & District Chapter, managing the Hit a Ball for MS fundraising event and participating in all other fundraising events. She continued to volunteer her time during the school year. During the summer of 2010 she joined the Friendly Visiting program and started visiting persons with MS who live in long-term care facilities. Last year Brietta volunteered at the Canadian Centre for Behavioral Neurosciences at the University of Lethbridge. While there, she completed an independent IN MS RESEARCH study with Dr. Gerlinde Metz, one of four Alberta endMS Regional Research and Training Centre (RRTC) researchers at the U of L. Her commitment and work ethic impressed Dr. Metz. With the intention of recruiting Brietta as an RRTC trainee, Dr. Metz introduced her to Dr. Wee Yong of the University of Calgary and director of the Alberta endMS RRTC. After an interview, Brietta was offered the Brietta Gerrard started volunteering with the MS Society three years ago after her sister was diagnosed with MS and is now working towards a degree in an MS-related field. position for an endMS grant. Next fall Brietta will attend graduate school to obtain an M.Sc. in Neuroscience at the University of Lethbridge. She will learn from Dr. Yong how to induce the EAE model (animal model of MS) in rats. Under the guidance of Dr. Metz and Dr. Artur Luczak, Brietta will conduct research involving imaging as well as intracranial electrode stimulation to see if this method can repair brain damage in order to delay or halt the progression of MS. This summer/fall Brietta and her instructors will conduct a pilot study before the actual experiments start. Brietta plans to pursue a Ph.D. in Neuroscience or Counseling, continuing to work with multiple sclerosis. She is uncertain whether or not she wants to work from a patient or research perspective. The endMS Campaign is a MS Society of Canada $60 million capital campaign designed to recruit young researchers to the field of MS research. Canadian scientists have been world leaders in the battle against MS, but with veteran researchers nearing retirement, new scientists must be recruited if the battle is to be won. The Alberta endMS RRTC has exceeded all expectations in terms of the numbers of researchers, clinicians, trainees and institutions brought together from across Canada. In Alberta alone, the RRTC brings together over 90 researchers and 140 trainees from institutions in Calgary, Edmonton, Lethbridge and Red Deer. For more information on the Alberta endMS RRTC, see the Fall 2010 issue of MS Connections, available at http:// mssociety.ca/alberta/publications.htm. MS Connections Summer 2011 7
Page 1 and 2: A newsletter connecting Albertans w
Page 3 and 4: MS Friendly Visiting program provid
Page 5: During the weekend of June 3-5, 19
Page 9 and 10: The Hay Lakes lunch stop, hosted by
Page 11 and 12: My MS A personal account of one per
Page 13 and 14: St. Paul man makes huge impact in L
Page 15 and 16: Ask Jeannine When do I need an indw
Page 17 and 18: option is to use a bathtub with a d
Page 19 and 20: ! ! ! Safeway Pharmacy MS Connectio

Summer 2011 - Multiple Sclerosis Society of Canada

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