Board of Directors - news

� Awareness campaign
The Society will initiate a more extensive awareness campaign in the coming year, primarily through the publication of pamphlets, booklets and posters. The target audience for these publications will be both medical practitioners and the general public.

� Press release
The Board authorized a press release, to be issued at the end of May, which will attract attention to the disease and promote the month of June as Scleroderma Awareness Month. (also in the USA) Accompanying the press release will be an article written by Joan Kelly, secretary of the Scleroderma Association of B.C.

� Annual General Meeting
The Society�s AGM will be held in Winnipeg, September 19th and 20th, at the Club Regent Casino Hotel. The program will include a bus tour of the city on Friday afternoon, and guest speakers on Saturday afternoon. This will be an excellent opportunity to learn more about the disease, to share ideas and information and to meet others who are concerned about scleroderma; we encourage you to attend. For further information on the AGM and how to register, please see News on this website.

missing Helen Stys -Director   (Picture from Sept, 01)

Bob retired in 1989 after 38 years as a public school teacher, counselor, and principal - also having served overseas in a leadership capacity in Ghana and South Africa as an education organization and development facilitator - and then served for 16 years as Executive Director of the BC Teachers Federation.

Bob has served on numerous Boards in the public and private sector, including the Scleroderma Association of BC for 12 Years as VP or Treasurer.

Bob played a significant role with respect to the incorporation under the Society Act of BC. He also worked in fund raising, negotiating and working with other groups, and producing and editing four scleroderma tapes which have been widely used on public service channels. And in establishing a scleroderma clinic and patient data base at St. Paul's Hospital in Vancouver and working with researchers at UBC on a project that resulted in publication of findings in the European Journal of Immunology.

Bob and his high school sweetheart, Joy, have been married for 47 years, and have three daughters and seven grandchildren.

Mary Beth lives in Halifax, Nova Scotia, and was the founder and leader of the Atlantic Scleroderma Support Group from 1992 -1996. She planned, organized and conducted monthly meetings with a focus on patient education and advocacy, and on social and emotional support. Mary Beth regularly visited hospitlized individuals and provided one-on-one counselling. She liasoned with professionals in the Dalhousie University Schools of Medicine, Dentistry, Dental Hygiene and Physiotherapy and was involved in a variety of scleroderma related projects with these groups.

Mary Beth has been active on a number of other boards and committees in the Halifax area over the years. She served on the Canadian Cancer Society board for about five years, two years as the Chairperson of the Education Committee, and two years as a regular education committee volunteer. Mary Beth has also worked as a volunteer counsellor and group leader in the patient emotional support group, "Living with Cancer". She has done volunteer work with the Arthritis Society, Nova Scotia Liver Foundation and the Multiple Sclerosis Society.

Mary Beth has an interest in environmental illness as related to scleroderma and scleroderma-like diseases. She promotes stress management, patient emotional support, comfort therapy, therapeutic recreation, wellness and a healthy lifestyle as powerful healing aids for people living with a chronic illness. Mary Beth possesses a B. Recreation degree, a B.SC. Foods and Nutrition degree, a Masters of Education degree and a Post Graduate Certificate in Family Therapy.

Grant is a high school Social Studies teacher, retired from full-time teaching, but still doing some part-time teaching in the adult education program in Calgary.

He was been involved with the scleroderma group in Calgary during the first two years, serving as one of the Directors of the Board of the Scleroderma Society of Canada.

In the past, Grant has served on the executive of the Social Studies Council of the Alberta Teacher's Association and has been involved in the organization of their annual conference on several occasions. He and his wife Maie, have two sons.

Irene is the mother of three young men and lives in the small town of Caledonia, Ontario with her husband, Myles. She was working in the business office of the Hamilton Spectator newspaper when she was diagnosed with P.S.Scleroderma in 1991. By 1994 she founded the Hamilton Scleroderma support group, primarily to meet other scleroderma patients. The following year she joined the Scleroderma Society of Ontario (SSO) board of directors.

Irene has chaired a major conference for the SSO as well as 3 fund raising events. She has prepared several of the Society's newsletters and has represented the SSO on the speaker's roster as well as public awareness director. Her present title is Past-President of the Scleroderma Society of Ontario, as well as Hamilton support group leader and public awareness director

Irene's passion is towards public awareness. Scleroderma patients need not feel like they are all alone.

Helen was diagnosed with scleroderma in 1993, and shortly after, because of health reasons, retired from her career as an accounting manager. She joined the Board of Directors of the Scleroderma Society of Ontario in 1996. Helen has been an active member of the Board since that time. In 1997, she created and formatted a web site on the Internet for the Scleroderma Society of Ontario and has manned it and updated it since its inception. She has a local support group in Brantford, and is on the speaker's roster for the Scleroderma Society of Ontario. Besides the Provincial conferences, Helen has attended two international conferences in the United States. She now represents the Scleroderma Society of Ontario as president.
Helen is truly an asset to the organization. Her representation on the national board will be mutually beneficial as an Eastern Rep for Canada as well as a local contact for the Provincial group.

�To whom will we possibly be presenting the business plan in our attempt to raise funds?�
(e.g. government, corporations)

�For what purposes or projects are we seeking these funds?�
(e.g. research projects, AGM)

COMMUNICATIONS � Lori has been in touch with Marion Pacy regarding communication objectives. Lori stated that, in her view, one of our objectives should be to develop materials that would be helpful at the time of a death related to scleroderma, for example, �in memoriam� cards or pamphlet material for families. Both Bob and Irene pointed out that they have materials prepared and used for this purpose, in BC and in Ontario; they will send samples to Lori. It was also noted that funeral homes have generic cards that can be used for this purpose. We welcome sample materials from others as well; please send them to Lori Jacobs or Mare Pacy.

DONATIONS can comprise a significant portion of the revenue for some Members; discussion on this matter needs to consider the role of both the national organization (SSC) and the Members.

Bob reminded us that the SCLERODERMA FOUNDATION HAS INFORMATION MATERIALS available, such as a package directed toward physicians, that we can consider when developing our own material. He suggested that when we have our material developed, the SSC could print bulk quantities, from which Members could purchase copies for their own distribution.

Mare Pacy is in the process of completing the OCTOBER issue of the NEWSLETTER.

A REVIEW OF THE WEBSITE is one of our objectives and Bob provided an outline for this purpose. He suggested the following headings for consideration:

a. Content � Any additions, deletions, amendments?
b. Balance � Should there be more or less emphasis on certain parts?
c. Sequence � Should we change the order of parts and features on the web site?
d. Format and graphics � What considerations should be given to this area?
e. General � What comments or reactions are there in general terms regarding the web site?

Bob suggested that WE SEEK RESPONSES from Directors, from our Member contacts and from the readers of �STRIDES�.
We ask that responses be submitted by November 20th so that they can be compiled and distributed for consideration at the December 1st conference call meeting. Responses may be submitted to any Director, to Ron Gullickson (Web Master), to Lori Jacobs or Mare Pacy (Communications) or to Grant Dustin (Secretary-Treasurer).

Regarding the VIDEOTAPE OF DR. POPE�S PRESENTATION, Lori commented that ....some editing would be done, to include the script from the information that was projected on the screen. Once the editing is completed, Bob offered to review it and to have the required additional copies made (As per the Board decision of September 21st, 16 copies will be provided by Tyson, one for each Member and three for the SSC.). Bob will also contact the people who signed the list requesting video and audio tapes.

Next AGM will take place September 20, 2003 in Winnipeg, with Marion Pacy serving as Coordinator.

In recognition of the Scleroderma Foundation and to acknowledge our appreciation for their support, it was proposed that we make that organization an Affiliate Member of our Society, without fee.
(Grant Dustin, Yvon Leveille; carried)

MOTION: �That Article 5.1(b) iv of the Consitution be deleted, and that the words �or by the Board� be added to Article 6.1(b).�
(Grant Dustin, Pam Mullin; carried)
Article 6.1(b) of the Constitution will now read:
The books, accounts and records of the Secretary and Treasurer shall be audited at least once each year by a duly qualified accountant or by two representatives of the Society elected or appointed for that purpose at a general meeting of the Society, or by the Board.

It was recommended that the annual fee remain at $3.00; it was also recommended that, for accounting purposes, we ask that these fees be paid by April 30.
(Yvon Leveille, Judy Hunter; carried)

Summary of BOARD OF DIRECTORS MEETING Saturday, September 21, 2002

Present: Bob Buzza, Mary Beth Clark, Grant Dustin, Irene Goodale, Yvon Leveille, Marion Pacy, Donna Kholi, Katherine Dewar, Ron Gullickson, Lori Jacobs, Keith Myiow Bob welcomed everyone to the first meeting of the newly elected Board of Directors. The following dates were approved for conference calls: October 13, 2002; December 1, 2002; February 16, 2003; May 25, 2003 (note: These dates are all on Sunday, to take advantage of lower rates.) MOTION: �That we subscribe to the �Sources� (The Information Service for Journalists & Writers) directory, at a cost of $288.00.� (Yvon, Grant; carried) Grant proposed that we create a business plan, outlining our objectives as a Society and our goals for activities and fund raising to meet those objectives. It was agreed that such a business plan would be very beneficial in approaching corporations and agencies in our fund raising efforts in particular. Committees: Research Committee � It was pointed out that this committee had not functioned as originally planned and that ideas generated had not materialized; it was agreed that we need to focus on our tasks in this area before concentrating on the people who might serve on the committee. Related to this was a discussion on our need for a Medical Advisory Board; it was agreed that we postpone a decision on this until we have a business plan prepared and we are in a better position to consider spending on research. Yvon emphasized the importance of clarifying our objectives as a priority; Donna explained how the Scleroderma Foundation separates the function of a medical advisory committee from that of a research review committee. Organizational Support � It was recognized that each Board member is a part of the support efforts required for the functioning of the SSC. Communications � We welcomed Lori�s willingness to serve in this area. Lori and Marion will prepare a report on our communication objectives for the coming year. It was agreed that one of our communication efforts should be in the production of packages of information for patients and for doctors; the support and advice of the Scleroderma Foundation is appreciated in this regard. It was agreed that Lori and Marion prepare a summary of proposals for awareness and communication for the next meeting. Web site � We agreed on the need to review the web site and to offer our suggestions to Ron Gullickson, who will continue to serve as web master.