A History Of Friends of Ostomates Worldwide (Canada) and The S.H.A.R.E. Program

By Ron Bartlett*

The author wishes to acknowledge that the early history of F.O.W and the S.H.A.R.E. Program is adapted from a report prepared by the late Maria Siegl in her capacity as Chair of the International Relations Committee of U.O.A. Inc.; President of F.O.W. (Canada) and Coordinator of the S.H.A.R.E. Program.  –   R. B.

In late 1982, or early 1983, the United Ostomy Association Inc. in the United States initiated a program to help needy ostomates in other, less fortunate, countries. Ostomates in underdeveloped countries were stigmatized and sometimes forced from their homes and ended up living on the streets because of their offensive odour. The primary reason was that up-to-date, odour-proof pouches, were either unavailable or too expensive for the majority of the poorer people. These unfortunate people were forced to improvise, using homemade appliances such as plastic bags, rubber gloves, pieces of old tire inner tubes and in some cases even half coconut shells. These makeshift appliances were usually fastened to their body by some type of rubber belt or cord. There was virtually no seal between the stoma and the appliance and the odour was a fact of life for these people.

An appeal was published in the U.O.A.’s Ostomy Quarterly asking for donations of ostomy supplies from its members. The program was called “Hands Across The Border” but was also referred to as “Project Mexico”.

Chuck Beadle who was Chair of the U.O.A. International Relations Committee wrote an article for the Ostomy International magazine which was published in the Winter 1983 issue. The following is an excerpt from that article.

“ More than one thousand pounds of ostomy appliances and accessories donated by chapters of the United Ostomy Association, Inc. were recently carried by Mexicana Airlines from Chicago, Illinois to Mexico City where the supplies will be distributed to ostomy patients unable to obtain such materials.”

International endeavours were complicated due to customs clearances and transportation arrangements. Bobbie Brewer, President of U.O.A. Inc. at that time, recognized the inherent difficulties. Since Chuck Beadle was not only the Chair of the International Relations Committee of U.O.A. Inc. but also the General Secretary of the International Ostomy Association (I.O.A.), it was felt that he would be the ideal person to handle this program. It was decided that he would take all future donations under the umbrella of I.O.A. and the program was renamed S.H.A.R.E. (Sending Help And Rehabilitation Everywhere).

The program, of course, also needed funds, and since neither I.O.A. nor U.O.A. Inc. had the necessary funds to allocate to this program, the decision was made, in conjunction with the I.O.A. to form an extra, fundraising, non-profit organization to make it possible for donors in the U.S. to receive tax-deductible receipts. Thus F.I.O.A. or “Friends of the International Ostomy Association” was formed and with the help of Louis Raffio, Barbara Rock and others, this association was incorporated in the U.S. and received a charitable number.

The following is an excerpt from the minutes of the International Ostomy Association.

13.1“The way of working between IOA and Friends of IOA was discussed at length. It was agreed that the Fund-Raising Committee of IOA was the main tool for finding money for the activities of IOA and that Friends of IOA was the main receiving organization principally in the USA. It was underlined that the management of the finances of the two organizations is to be kept entirely apart. Further, it was resolved to solicit Friends of IOA for financial help to IOA activities.”

After the initial shipment to Mexico, which was sent by U.O.A. Inc., further product donations were solicited along with membership donations for F.I.O.A. The membership at this time was approximately a dozen people. Between 1983 and 1986 a small shipment was sent to Costa Rica and a 400 lb. shipment was sent to Father Ortega in Florida who was able to forward it to the Catholic sisters in Cali, Colombia.

In 1983, Archie Vinitsky, the co-founder and first President of I.O.A. addressed a group of people at a special I.O.A. session during the U.O.A. Conference in Boston, MA.

Maria Siegl from Canada was present at that meeting. After her retirement from Hollister Limited, Maria had travelled to many countries and had seen firsthand the miserable conditions under which some ostomates lived in some of these countries. She was very enthusiastic about this project and asked Archie if she could start up this project in Canada and this was agreed to.

Thus the seed was sown that eventually grew into our present FOW (Canada)

In the beginning, the membership money raised in Canada was sent to Chuck Beadle in the U.S. and he, in turn, would remit the money needed to pay for shipments, back to Canada.

Due to the fact that F.I.O.A. was only incorporated in the US, Canadian donors did not receive income tax receipts. Very soon, Canada’s membership and donations exceeded the US donations and Canadians also wished to be able to deduct these donations from their Canadian income tax. The first solution was, that Canada set up a separate account and it was agreed to form F.I.O.A. (Canada).

In 1984 F.I.O.A. (Canada) started to systematically solicit donations of ostomy supplies from chapters, pharmacies, surgical stores, ETs, hospitals and Cancer Societies. Strong support for this project came from the Canadian Association for Enterostomal Therapy (CAET) and The World Council of Enterostomal Therapy (WCET).

Very soon donated supplies started to come in and a place was needed to store them. The first collection centre in Canada was situated on the premises of the Hamilton Chapter in Hamilton, Ontario with packing done at a warehouse. The response that was received was so great however that it soon overwhelmed the chapter office and larger premises were needed. Les Kehoe stepped in at this point and offered his home as a collection centre and this offer was gratefully accepted.

In the meantime, arrangements had gone ahead to have F.I.O.A. (Canada) incorporated and it was registered as such on April 25, 1986. On September 8, 1987 Revenue Canada declared F.I.O.A. (Canada) to be a charitable association retroactive to January 1, 1987. The association was given the charitable number 0762278-11-13.

Early in 1987, the I.O.A. requested that the F.I.O.A. change its name to eliminate the International Ostomy Association component as this was causing some confusion in the international community.

F.I.O.A. (Canada) chose the name Friends of Ostomates Worldwide (Canada) and applied for Supplementary Letters Patent. The name change was accepted and verified by Supplementary Letters Patent dated April 13, 1988. This was followed by a letter from the Charities Division of Revenue Canada acknowledging the name change. Thus our current association came into being.

The first Directors of F.O.W. (Canada) were:  Maria Siegl,  Allan M. Porter,  Sheila A. Zapf,  Bette Yetman,  Dorothy Pinkney,  David Metcalfe and Claude Campbell.

At this time Maria Siegl was Chair of the International Relations Committee of U.O.A. Inc. and she was asked if she would take over the entire responsibility for overseeing the organizations in both the U.S. and Canada and to act as Coordinator of the S.H.A.R.E. Programme.

The programme had grown in Canada to the point where there were now 4 collection centres, one in Halifax NS run by Paul Tilley, one in Montreal QC run by Jean-Pierre Lapointe, and one in Oshawa ON run by Les. Kehoe and one in Vancouver run by “Andy” Manson. Three of these have since closed and a new one opened. We currently have 2 collection centres; one in Montreal QC operated by Jean-Pierre Lapointe and one in Oakville ON operated by Richard Olley.

The work done by Maria Siegl was recognized at the 7th World Congress of the I.O.A. held in Rio de Janeiro in 1991 when she was introduced to the delegates as “The Mother of World Ostomates”

Since 1986 F.O.W. (Canada) and its predecessor F.I.O.A. (Canada) have shipped over 45,000 kilograms (99,000 lb.) of ostomy supplies to 28 different countries.

From a small acorn, a fairly large oak has grown.

The packing procedure has become somewhat more arduous and complicated over the years. In the earliest days most of the appliances were of the one-piece variety but today the majority of the appliances that we receive are two-piece and this means that flanges and pouches packed in the same carton must be matched size for size.

The cartons are packed as to the type of ostomy (Colostomy, Urostomy, etc.) Each carton contains on average, 22 boxes of appliances and weighs an average of 7 kilograms.

After packing and weighing, an identifying, numbered, label is attached to the outside of the carton showing the type of ostomy supplies inside and the weight.

A summary is then made of all the cartons and for customs purposes, this summary must show the number of individual boxes inside each carton and the names of the manufacturers.

A typical packing may consist of 160 cartons weighing 1,120 kilograms; that’s over a ton of appliances including boxes.

Proper paperwork must then be obtained from the consular office of the country to which the shipment is being sent and arrangements made with a broker for the actual shipment. All of this work is carried on by a relatively small group of volunteers.

Our principal problem is money. It is very expensive to ship these items. Over the past six years, our shipping costs have been approximately $35,000.00.

We need your help if this work is to carry on. Please be generous.

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