The origin of EFFORTS
In late November of 1997, Gary Bain, Mick Wagner
(We lost Mick to our Lord on 1/20/2000) and Sharon Adkins, were members of
another support group that did not allow advocacy. We had an idea that there might be interest in forming sort of
a "members profile" site that would be accessible by the group.
From there we typed up a questionnaire so we could compare notes with
others in our "boat" so we would all know if we were "normal" in our
disease.
Things like;
Was it common to lose bladder control a little, or our nose run, when we are panicky and out of breath?,
What was causing us suddenly to become panicky?
Were we receiving the same medicines and told that this was the best they could
do?
Were we told to "get our affairs in order"?
Did we suddenly find everything stressful?,
Did they send us to Pulmonary Rehab?
Did they understand how we really felt?
Were there better medicines and were our doctors aware of them?
How long had we had the disease and how had it affected us individually?
We started it in December of 1997 and it took off like gangbusters. Suddenly everyone was
interested in completing the Questionnaire to see how they compared to others by actually
comparing the Profiles in writing. We kept adding questions to it as well. It still
is one of our favorite parts of our "family" and can be seen by clicking on
Members Pages and Profiles .
Early in March of 1998, we came upon the idea of forming an advocacy/activist group to find out
what kind of research, if any, was being done specifically for our disease.
Since the previous list was only a
support group, it was difficult to organize any type of activist group for
emphysema since we were somewhat limited as to what we could post. It was then we felt that we could start another support
group that also provided an activist side and begin fighting for more effective treatment and cure
for our disease from what we had learned.
So our list would be as fairly run as possible, we realized we needed other input to
manage the new site.
Others, who were also active on the other list, came with
us as Executive Board members. This gave us 5 folks to "run" the list
with, allowing 5 to prevent tie votes in such matters important to the day to day activity
of the list. We opened EFFORTS on May 6th 1998. Since then, we now have 9
members on our Executive Board.
Several other folks joined us from the same support list, all wishing to also become
activists. Several are still members of both lists. Many are active on our Teams in
helping meet our goals.
We have no commercial ties with any company. We are only people with Emphysema, we are
only human. We are only humans with Emphysema. We are not multimillionaire's
although we are an industry for many multimillionaire's. We are the "tired, the
hungry, and the poor" in many ways.
We are self-funded, meaning that we have sufficient means to pay for our needs in
maintaining the list. No company supplies us with funds, we take in nothing and
spend very little except our precious time. As you will learn, we also are self
sufficient by being completely voluntary. Each of us can help the other and many
have in different ways. Limited though we may be, some have helped more than others.
Our name includes the word Foundation. This hints to the fact that we may provide
funds as other endowment type Foundations might. In fact, our Foundation means only
that we are built from a solid base (and it was a word that worked in well with
EFFORTS :>), (Emphysema Foundation For Our Right To Survive.).
We accept no contributions nor
affiliations with any group that would compromise our integrity.
This explanation is for our friends and new members, as well as those who were interested
in just who we are and what are our intentions.
Our intentions are extremely simple.
We hope to help direct more research into more effective treatment and hopefully
a cure for emphysema and related lung diseases, teach fellow patients how to
live with their new lifestyle, and teach others what it is like to have this
disease and what can be done to help prevent it.
If anyone has any questions, please feel free to contact any of us personally.
Thanks for listening.
Gary
Bain, President
Frank
Barrett,
Vice President
Executive Board Members
Joan Esposito
Beth McDonald
Linda
Watson
Last update
10/03/2007
Text and Images, this page: © 2001, 2002, 2007
EFFORTS
EMPHYSEMA FOUNDATION FOR OUR RIGHT TO SURVIVE
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Efforts