Lupus SK Society Inc.

Working together to conquer Lupus - 1 in 1000 persons in Canada have Lupus

A Proud Member Organization of Lupus Canada

History

Lupus SK's 35th Anniversary

“Hope is Growing” was a suitable motto 35 years ago when the organization first began with a small informal Saskatoon group in the fall of 1979. Since that time it has grown tremendously by the involvement of its members in promoting understanding, education, public awareness, and research. "The Lupus Group" held its inaugural meeting in March 1980 in Saskatoon with Dr. W. Earle DeCoteau as guest speaker and attended by people with lupus from around the province. The lupus community was initially affiliated with The Arthritis Society, but soon struck out on its own. By November the name “Lupus Erythematosus Society of Saskatchewan” (or L.E.S.S.) was chosen, a skeleton constitution was established and the lupin flower logo and motto were developed. Many who were suffering with lupus had never had the opportunity of discussing their symptoms and struggles for control with anyone but their doctors. With the development of Chapters in Saskatoon, Regina and Prince Albert each with their own Chairperson, Lupus Groups in Moose Jaw and Swift Current - each with their own Contact - and Area Contacts established in outlying areas across the province, more and more people came to know about lupus, its symptoms, possible triggers of the disease and available treatment. Although there was no known cure, some hope of remission was supplied through the use of certain drugs and following commonsense rules and applications.

 

There was very little information available in the early years on this puzzling disease called “the disease with 1,000 faces” and it was difficult to diagnose in its early stages. Books written on the subject were almost non-existent and any informational articles gave little help as to treatments and possible outcome. However, with the advent of the lupus educational support meetings and the newsletter which included articles from rheumatologists and other medical experts, people affected by lupus in Saskatchewan had a life-line.

Awareness was originally created through posters inside buses, on Co-op and Safeway bags, and even on billboards, the latter funded by the Kinsmen. Brochures and leaflets were distributed at several locations, and through time these have been updated and reprinted. In recent years the Fact bulletins which were previously handed out, together with information from well-known rheumatologists and reliable medical sources have been compiled into a popular sized booklet entitled “Living Well With Lupus FACTS” and these have been distributed among Doctors' offices, Medical Clinics, Area Contacts and other available points.

Our newsletter, "The Saskatchewan Lupine" is still published three times a year but with new technology, color added, better quality paper, excerpts from American and UK newsletters and Canadian Health Journals, copies of Symposium speeches, news and pictures from area lupus-related activities. All this is yours when you take out a Membership of only $20 per year. Personal stories of journeys with lupus are always appreciated. The lupus pin has also been updated and the red lupin on the Saskatchewan-shaped background was a fitting choice.

 

Even just a few years ago much of the population had never heard of lupus, nor did they understand how a person could feel so totally fatigued when they did not “look sick”, so it was a challenge to attempt any fundraising but that challenge was met with many garage sales, raffles, more sales of crafts and baking, purchase and resale of lupin flowerseed packets, notepaper, souvenir spoons and pins, all bearing the lupin logo. Coin collection tins were set up in area businesses, from the larger and well-known Safeway's to the smaller corner store, wherever members were willing to apply. Funds raised were used to purchase stationery supplies and postage, typewriter and photocopier, pay for printing of newsletters and brochures, advertising and posters, rentals of meeting rooms and paying for Guest Speakers.

 

Fortunately there have been those willing and able to step in and take leadership roles over the years, and under their command the Society, now officially known as the Lupus SK Society Inc., has grown and flourished to the point where it is today one of the most successful of all the provincial lupus societies. We feel that our 35th Anniversary is an opportune time to step back and take a look at the many individuals and sponsors who have been involved in our successes and to list some of the ways in which we have sought to educate the public and contribute to lupus research.

 

In 1987 Regina Chapter began holding annual Hawaiian Benefit Dances and these continued for approximately ten years; these were well attended and many came in costume to enjoy food and mai tais, raffles and prizes. The successes of these were due in a large part to Cindy Bates and her parents, Karl and Delaine Kuchinski who did a lot of the groundwork. 1986 saw the publication of the Prince Albert Lupus Chapter. Cookbook, a success in its own time. More recently and on a larger scale our Butterflies of Hope Cookbook was a phenomenal success launched in 2005 and followed in 2009 by an equally popular edition of Irene's Cookbook for Lupus. London Drugs played an important part in the success of our cookbook sales and we are deeply indebted to them. Also, thanks to Betty and Bob Bellamy for the many cookbooks they sold. Betty actively promoted World Lupus Day for many years sending letters to our SK Lieutenant Governor, Lynne Yelich, MP & MLAs.

 

In 1994 we hosted the Lupus Canada AGM in Regina and also celebrated our 15th Anniversary with a special lupin-decorated cake; ten years later the national AGM was again hosted by Saskatchewan, this time in Saskatoon, an outstanding event which set the bar high for other provinces. An interesting means of raising funds that year was being the recipient of sale proceeds of a Charity Steer raised by a group of 4-H members, in return for which some of our own members attended at the livestock sale and handled “gofer” duty! Quite a learning curve but fun!

Also in 2004 when the Brier was held in Saskatoon, we were given the opportunity to run the Coat Check for one evening and shared in those profits; dedicated volunteers drove in from as far away as Melfort and had a fun time for a good cause. Fundraisers which would not have been possible even ten years ago are today being run efficiently and with great results.

 

For the past four years we have held an August Golf Tournament at The Willows Golf & Country Club in Saskatoon with much enjoyment and financial success and a fifth is planned for August 22nd of this year. Adventure Destinations International has been the title sponsor, donating $10,000 annually to this event. For the past three years, we “let our fingers do the walking” and dialed up $1,000 annually from the Centennial 360, 12 in 12 Community Campaign in Saskatoon by voting for our own organization. In 2012 we applied for core funding available from Glaxo Smith Kline (GSK) and received the grand amount of $22,500; this was followed by $20,000 last year which enabled us to hire a part-time administrative assistant and to upgrade our software program. Also in 2013, GSK implemented an 'Educational' Funding Grant and Lupus SK was awarded $10,750 which was used for our first-ever major media coverage, promoting October Lupus Awareness Month and our Fall Medical Symposium. Media used included radio, T.V., online ads and newspapers. We have just learned that this year we are in receipt of another $15,000. We should add that all of this extra funding was received from applications through the proper channels and would not have been available without the resourceful and strong leadership we currently enjoy under our President and Treasurer/Director, Lloyd Driedger and Irene Driedger respectively.

 

We also give a special Thank You to Georgia Piechotta for her original art creations in paintings, Christmas cards and seed packets. Friends of Lupus SK, Sylvia Rogerson and Jean Mattson, both sewed and donated lovely quilts for successful raffles and Sylvia also completed a special Lupus Quilt from blocks submitted by our membership. One of our members, Darleen Lange, created and donated a beautiful quilt which was raffled in 2012 and sales of one-of-a-kind beaded bracelets by Judy Willey of Saskatoon added and sales are ongoing to our resources. These unique jewellery items have already raised nearly $3,000 for the Lupus Society.

 

2013 was the first year for the Scott Moen Memorial Golf Tournament, held at the Saskatchewan Landing Golf Club; this event was organized by Scott's family and friends and they are so grateful for the heartfelt support of all the golfers, sponsors and helpers. A whopping $9,000 was split between Lupus SK and The Canadian Diabetes Association. Trench Fitness of Regina has come through with their second annual Lift Off for Lupus fundraiser consisting of Powerlifting and Strength Training Classes. We are pleased to have them on board and much appreciate the 2014 donation of $5,075 .

 

October and Lupus Awareness Month has for several years meant weekly information days at the Melfort Mall followed by a Craft and Bake Sale with donations from friends of Lupus SK. Dress Down Days continues to be an interesting and fun concept for fundraising and public awareness; various businesses agree to wear the appropriate "buttons" on specified days, giving them the privilege of dressing casually for that day with a donation going to our cause.

 

We are grateful to Marianne Weber for providing the 35th Anniversary photo collection, along with her many years of dedication as newsletter editor, Moose Jaw area contact and co-chairing the Symposiums in Saskatoon.

 

The Walk for Lupus events held in various locations each May since the first World Lupus Day in 2004 have not only raised substantial amounts in pledges but have also raised considerable awareness, which is in accordance with our Mission Statement. From 2001 to 2005 evening bingos in Melfort, coordinated by Vi Van Allen realized $25,000 for donations to research and for several years a new form of entertainment has made its way into the Lupus Society's fundraising efforts, the Chuck-a-Puck which has provided fun and funds at several Hockey Arenas. This was begun by two enterprising members in Moose Jaw and has since spread to other centres.

 

With some of the funds raised we have been able to hold Spring and Fall Symposiums with Presentations and Guest Speakers from various fields, all relevant to the care and treatment of lupus patients; recently we have opened these to all autoimmune diseases, providing information and discussion for those with many other illnesses such as celiac disease, multiple sclerosis, Addison's disease, rheumatoid arthritis, type 1 diabetes, Sjogren's syndrome, Graves disease, scleroderma and others. We have enabled Youth Delegates to attend special conferences in eastern Canada, thereby widening their knowledge and letting them meet other young people with the same problems that lupus has brought to them. In October 2006 we held our first Annual Youth Symposium with much success, due in large part to the participation of Dr. Janet Markland, Dr. Alan Rosenberg and Dr. Suzanne Sheppard. The late Dr. John Sibley was also one of our earlier medical advisors and offered his expertise on many occasions as well as reviewing medical submissions for the newsletter.

 

The Board of the Lupus SK Society, members and her patients were saddened in 2013 by the death of Dr. Janet Markland, noted Rheumatologist and Physician, who played a large part in the growth and success of our organization. She was a willing and most informative speaker at many of our functions and in her own way contributed to fundraising and awareness for several years by opening her beautiful yard to Garden Parties for all those interested. She is missed.

 

One very important achievement in our 35 year history has been the creation and maintenance of our website.  Under the capable management of Julianne Weber, formerly of Moose Jaw and now of Vancouver, www.lupussk.com continues to provide viewers with current lupus information, personal stories, upcoming meetings, symposium dates, fundraiser details, research, constitutional updates and contact information including the toll-free phone number, e-mail and mailing addresses.  Julianne has also provided technical expertise with the newsletter and other graphic-related items including the calendar photo contest and fundraiser. Thank you, Julianne.

In addition to regular office expenses, funds raised now cover the necessary cost of photocopiers and computers, repaired and replaced periodically along with paper, toner, etc. Spring and Fall Medical Symposiums and Guest Speakers as needed and certain Travel Expenses. Donations to lupus Research are made on an annual basis. Approximately two years ago a new prescription drug was approved by Health Canada for us in lupus patients; this drug is called BENLYSTA and serves to limit the activity of protein in the patient’s blood. We hope to soon learn more about the use and results of this drug, the first drug developed specifically to treat lupus. We also hope that our research dollars go on to make a difference in the lives of lupus patients.

There are many, many individuals and couples who could and should be named as having volunteered their time and efforts over the years for the building and success of our organization, including many who themselves were suffering the effects of lupus flares and long-term fatigue. Space will not permit such a list, but suffice it to say we know, and you know, who you are and we do thank you most sincerely. Simply by taking out a membership, our entire Lupus SK 'family' contribute to the growth and well-being of our organization, but we encourage you to also attend meetings and take on leadership roles. This is your Society and for your benefit, but we need your interest and participation to continue its success.

It is fitting that our slogan has evolved from “Hope is Growing” to “Working Together to Conquer Lupus” and the more concise “Conquer Lupus” appears on the gold stickers freely used on our mailouts and all craft and bake sale items. It is our fervent hope that one day this will ring true and a cure will be found.

30 Years of Growth

In 1979 a small but dedicated number of "lupines" came together in Saskatoon to create a cohesive group intended to support and educate those who were diagnosed with lupus and those who lived and worked with lupus sufferers. On March 4, 1980, Gwen MacDonald, Nurse Educator, and Joni Sereda, Social Worker, sent letters to lupus patients in Saskatchewan inviting them to attend an organizational meeting. The first meeting was held at the (Royal) University Hospital on March 19th with 45 persons attending. Dr. W.E. DeCoteau, Medical Director of the Rheumatic Diseases Unit at that hospital was the first speaker on April 30th and Pat Leece chaired the first executive meeting. Five committees were formed: Program Planning, Visitation, Lunch, Publicity and Newsletter.

Alison Tod chaired the first executive meeting on September 15, 1980 where incorporation was discussed. Two months later a basic constitution was assembled. The name "Lupus Erythematosus Society of Saskatchewan" (L.E.S.S.) was adopted and the following year saw incorporation completed. The lupin flower logo was designed and the motto "Hope is Growing" adopted in 1983. LESS was on its way! Throughout these thirty years we have seen many changes in venues, Presidents and Boards although several individuals carried on for more than the required term and definitely did more than their share in spite of dealing with the illness that bound them together. One thing that has remained unchanged is in these thirty years is our vision which has been ingrained in the LESS mission since inception, "To provide support for those affected by lupus through understanding, education, public awareness and research."

Initially we established Area Contacts to provide communication with lupus patients, some of whom had not previously met anyone other than their physician who was familiar with the disease. In fact in those early years few people had even heard the term "lupus" and when they did, it conjured up pictures of some mysterious illness that brought despair and even death. Yes, lupus can still prove fatal but research has brought about many measures and drugs that offer relief to so many lupus patients and that may result in long-term remission. In order to fund this research, and to meet their goal of providing education and public awareness, LESS has used its resources and people power for raffles, bingos, craft and bake sales, golf tournaments, barbeques and dances, cookbook sales (our third cookbook is now on the market!) as well as Memorial and General donations. The proceeds have all contributed to the realization of our dream that we will find a cure. In a recent past year, some of our members even assisted at a stock sale where a Charity calf was donated to our Society by 4-H Clubs and the proceeds from this funded Lupus Youth related activities.

So many interesting and worthwhile events take place through LESS, and we hope you, our members, will join us in telling more of our story and how the organization has evolved. If YOU have a story to tell about how any part of LESS or our newsletter has made an impact in your life, please write to idriedger@sasktel.net and lupus@lupussk.com. We'd love to hear from you!

Lupus Erythematosus Society of Saskatchewan (L.E.S.S.) 15th Anniversary

The seeds of hope for L.E.S.S. were planted in 1979 when a small group of lupins felt a need for a support organization to assist themselves and others with the effects of this chronic illness. On March 4, 1980, Gwen MacDonald, Nurse Educator, and Joni Sereda, Social Worker, sent letters to lupus patients in Saskatchewan inviting them to attend a meeting to organize a support group. On March 19, the meeting was held at the University Hospital in Saskatoon. Forty-five people attended from across Saskatchewan: Saskatoon, Melfort, Moose Jaw, Duck Lake, Watrous, Humboldt, Tisdale, Willowbrook, Leask, Rosetown, Conquest and Caronport, were all represented.

Dr. W.E. DeCoteau, Medical Director of the Rheumatic Diseases Unit at the University Hospital was the first speaker on April 30, 1980. Pat Leece chaired the first executive meeting on June 23, 1980. Five committees were formed: Program Planning; Visitation; Lunch; Publicity; and Newsletter.

Alison Tod chaired the executive meeting on September 15, 1980, at which incorporation was discussed. On November 17, a basic constitution was assembled. The name L.E.S.S. and the original logo were adopted. Incorporation was completed on March 5, 1981. In 1983, Barb Chipperfield designed the lupine flower logo and the motto 'Hope is Growing' was adopted...