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.
- 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
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
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.
Written by Gary Bain, Founder & President 1998-2008
Our original founders Gary, Mick and Sharon have all passed away. We are forever thankful for their leadership
and courage. They showed us that we can yell pretty loudly to advocate for Emphysema/COPD, even though
we cannot breathe.
Written by Linda Watson, President 2008-2021