A journey ends …..
On October 31 2015, the Lupus Foundation of Ontario (LFO) will come to the end of a
journey that started 38 years ago in a small southern-Ontario town called Ridgeway.
Although we are sad to be closing our doors we are proud of our history of service to
the lupus community and feel that we have accomplished what we set out to do.
In 1977 four people with lupus and 2 doctors met because they shared a problem. They
had so many questions about lupus but didn’t know where to find the answers. What is
lupus? What causes it? What are the symptoms? Can it be treated? Is it hereditary?
What is the life-expectancy? They said: “We can do something about that.”
Motivated by their own needs and fuelled by a passion to help others, these people
created the Lupus Foundation of Ontario to ensure written information would be
available for newly diagnosed patients, to create a supportive network where people
could share their experiences, to promote research activities and to increase the
public’s awareness of the disease.
This scenario was repeated many, many times in large cities and small towns
throughout North America and around the world. The calls for information about lupus
were widespread and urgent. In response to these pressing questions medical
professionals of every kind generously shared their knowledge by speaking publicly
about lupus and writing articles and books so information could be shared more widely.
Today much more is known about lupus and a diagnosis is less frightening. People still
have questions but they can now get answers from a number of reputable internet sites.
As well, people can share their lupus experiences on social media sites like Facebook
and Twitter, in chat rooms and through blogs. In this new world we can rely on the
dedicated specialists, researchers networks and large lupus organizations to ensure
that new knowledge gained through research will continue to be made available to the
people who need it.
In 2015 there are people who haven’t yet heard of lupus and, while the disease is
largely treatable, we still don’t have a cure. However, the Lupus Foundation is proud to
have contributed more than $870,000 to support lupus research and services and has
conducted many public awareness activities, from flag raisings in Ontario communities,
widespread dissemination of fact sheets and pamphlets to lupus clinics, doctors’ offices
and pharmacies to making representations to governments, both municipal and
The LFO is proud to have made a contribution and thanks
… the pioneers who launched us on our journey,
… the dedicated volunteers and staff who walked every step of the road and
… the people who assured us time and time again that our work made a
difference in their lives.
At the time, these organizers may have been unaware that lupus patient organizations
were springing up in other cities and small towns throughout North America. These
organizations all had similar goals and their collective calls for information about lupus
were widespread and urgent.
In response to this pressing need, medical professionals made it a priority to share their
knowledge with patient groups through meetings and seminars. They wrote articles that
were circulated through newsletters and authored books that the lupus groups provided
to libraries. The body of literature available to lupus patients grew and grew.