005014916 00281 - National Archives of Ireland · ROBINSON Robert [150] 29 March Administration of the Estate of Robert Robinson late of Dunmullan Omagh County Tyrone Farmer who died
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HEMOPHILIA TODAY FALL 2003 2 A fter a hiatus of one issue, your newsmagazine is back in force this autumn, featuring the 50 th Anniversary celebrations of the Canadian Hemophilia Society held last May 8-11. This major meeting marking the Golden Age of the CHS was held in Montreal, birthplace of the organization. It was extremely rewarding to meet old friends and to exchange in such a festive atmosphere. The celebration represented an opportunity to take stock of the immense progress in the treatment of bleeding disorders accomplished these last 50 years, and this, despite the terrible setbacks experienced. Held at Complexe Desjardins, a public mall in downtown Montreal, the public display entitled 1953-2003: 50 Years of Tragedy and Triumph, commemorating a half-century of service to people with bleeding disorders, was particularly successful. The information presented was accessible to the public and the parallels to hockey, with the added contribution of Mario Lemieux, attracted many visitors. The CHS took advantage of the occasion to highlight the significant work of volunteers since the creation of the Society, including Past Presidents and health care providers, by awarding them the Queen’s Jubilee Medal. Other noteworthy events were incorporated: the 1 st Canadian State of the Art Conference on von Willebrand Disease, the medical symposium on research into bleeding disorders, and the launchings of the commemorative book, 50 Years to Remember, and of the campaign entitled Bleeding Disorders Initiative, whose objective is to make the public aware of the complete range of bleeding disorders. The four days were extremely busy. In this issue you can relive these moments through the testimonials of people who attended the various events. What’s more, you can consult on-line versions of the commemorative book and the public display on the CHS web site: www.hemophilia.ca. And now for the next half-century of progress… EDITOR’S KEYBOARD Please feel free to respond to this editorial or to any other article that has appeared in Hemophilia Today by writing to The Editor, Hemophilia Today, 119 Thomassin, Beauport, QC, G1B 2W6 or by E-mail at [email protected]. A New Title for the CHS Newsmagazine Hemophilia Today now has a new title. The editorial committee, following the appeal for suggestions addressed to readers several months ago, retained a proposal which incorpo- rates the concept of service for people suffering from the full range of bleeding disorders, while at the same time ensuring a certain continuity with the past. Consequently, as you may have noticed on Page 1, your newsmagazine is now entitled: Hemophilia Today — Serving the Bleeding Disorders Community. Thank you for your ideas. EDITOR’S KEYBOARD..............................2 PRESIDENT’S MESSAGE ........................3 MY FRIEND JIM LOVE ............................3 NEWS UPDATE ......................................4 CELEBRATING 50 YEARS OF SERVICE AND SUPPORT Introduction............................................6 Experiences at the 50 th ............................7 CHS Chapter Pioneers ............................8 Golden Jubilee Medal Presentation ..........10 FIRST STATE OF THE ART CONFERENCE ON VWD ............................................12 FOCUS ON RESEARCH CHS Research Program ........................14 Care Until Cure ....................................15 Novo Nordisk – CHS – AHCDC Fellowship ..17 MEDICAL NEWS: PAIN – THE FIFTH VITAL SIGN..........................18 FOCUS ON CHAPTERS Second Annual Maritime Family Weekend..20 40th Anniversary Celebrations in Central West Ontario ............................20 THE GLOBAL PERSPECTIVE Québec – Senegal Twinning Project ..........21 Hemophilia in Senegal – A Physiotherapist’s Experience ................22 THE BLOOD FACTOR Gene Therapy: Two Steps Forward, Two Steps Back ....................................22 THE FEMALE FACTOR My Journey to a Diagnosis ......................24 FALL 2003 • VOL 38 • NO 2 Hemophilia Today is the official publication of the Canadian Hemophilia Society (CHS) and is issued three times yearly. The Canadian Hemophilia Society exists to improve the quality of life for all persons with hemophilia and other inherited bleeding disorders and to find a cure. The purpose of Hemophilia Today is to inform the hemophilia and bleeding disorders community about current news and relevant issues. Publications and speakers may freely use the information contained herein, provided a credit line including the volume number of the issue is given. Opinions expressed are those of the writers and do not necessarily reflect the views of the CHS. The CHS consults medical professionals before distributing any med- ical information. However, the CHS does not practice medicine and in no circumstances recommends particular treatments for specific indi- viduals. In all cases, it is recommended that individuals consult a physician before pursuing any course of treatment. Brand names of treatment products are provided for information only. They are not an endorsement of a particular product or company by the writers or editors. Hemophilia Today 625 President Kennedy Avenue, Suite 505 Montreal, Quebec H3A 1K2 www.hemophilia.ca Phone: (514) 848-0503 Fax: (514) 848-9661 Toll Free: 1(800)668-2686 Hem hilia TODAY Serving the Bleeding Disorders Community IN THIS ISSUE Editor François Laroche President Tom Alloway, Ph.D. Executive Director Daniel Lapointe Editorial Committee Hélène Bourgaize Clare Cecchini David Page François Laroche Patricia Stewart Contributing Writers Tom Alloway, Ph.D. Maureen Brownlow Clare Cecchini Colin and JoAnn Craig Ian DeAbreu Gershon Growe, M.D. Paula James, M.D. Michel Lalonde Daniel Lapointe François Laroche Tradina Meadows Fatima Mukai Kathy Mulder Heather O’Grady David Page Enid M. Page Ken Poyser, FCA Tracy Pressey, M.D. Francis Roy Patricia Stewart Eric Stolte Silvia Travaglini Ann Wood Production Coordinator David Page Production Assistant and French Version Coordinator Hélène Bourgaize Graphic Design Paul Rosenbaum Translators François Laroche Normand Latulippe Lise Malo David Page Marie Préfontaine Printing xxxxxxxxx COVER PHOTO Standing: Paul Laxdal; his mother, Patricia; Linda Laxdal, CHS President, 1984-86; Frank Bott, President, 1967-70. Seated: Darlene Poyser; Ken Poyser, President, 1980-82; Tom Alloway, current CHS President.
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