|
This is the 10th anniversary for the IPA. Over that time we have
raised close to 1 million dollars between the SBC and IPA.
Three organizations have been created and are operational: The
International Paruresis Association (IPA), The American Restroom
Association (ARA), and The Shy Bladder Center (SBC). Each has its
own tax-exempt status and individual boards, but the organizations
are inter-related.
We had hoped that paruresis would become a household name, which
probably hasn’t happened. However, “shy bladder”
seems to be in the press more and more frequently. We suspect that
the majority of people know that term. Some of the references directly
refer to topics unique to our activities, which implies that the
word is getting out to the general public. Younger people seen less
ashamed that they have this condition than people ten years ago.
Dr. Steven Soifer has done over 150 radio interviews and there
have been hundreds of newspaper articles about paruresis. Probably
over 500 people have attended and been helped through the work shops.
Shy Bladder Syndrome has sold over 10,000 copies.
The IPA Board of Directors is a committed entity. There are currently
10 members. There are about 30 advisory board members, too.
Financial condition. The 2006 fundraising drive
was a great success, having brought in over $70,000, more than the
organization has ever raised from its members in the past. While
we are set for 2007, it is difficult to make long term plans when
we scrape by from one year to the next with out long term funding.
Our 2008 fundraising drive will be an ambitious $100,000. We will
also be looking at other sources of funding.
Staffing. Steve is on payroll for 2.5 hrs/week
as staff and development director, Karen is office manager and works
8 hrs/wk. Yvonne is a staff associate and works 10 hours/wk, and
Lauren also a staff associate and works 2-4 hours/wk. All are paid
though the IPA. Time is no longer being allocated between the IPA
and SBC, but SBC is “borrowing” from its parent. Dave
Berman and Steve are co-directors of SBC, and Judy s a staff associate,
and all three are on the SBC payroll. ARA has no paid staff. Bob
Brubaker has been an unpaid volunteer and has the title program
manager.
Foci. Drug testing has been our major focus for
the last several years, but without a lot of progress. We have talked
about a professional scientific conference on paruresis, but have
never raised the funding. We will have a conference in some form,
even if it is only a teleconference, in 2007. Greg from Belgium,
who runs the European IPA Board, is one of the world wide experts
in the understanding of paruresis and Steve believes that he may
hold the key to solving the problem of the mechanism of paruresis.
Steve has been redefining paruresis as a “chronic pelvic floor
dysfunction” to the urological and medical communities, based
on Dr. David Gordon’s work.
Medications. IPA Board of Director member David
King believes that we are putting too much focus on support groups
and we need to focus more on a drug solution to the problem. This
ties into h above. Our lack of epidemiological data is becoming
a renewed issue.
Media coverage. There has been a dramatic increase
in articles printed related to paruresis. In 2000 we had 20 articles
published relating to paruresis, and now there are hundreds and
hundreds out there on the topic. Googling the term “paruresis”
or “shy bladder” brings up thousands of entries. Also,
we’ve had free Google ads running for over a year now.
Fundraising. All fundraising in the past, except
for $5,000, has come from our members. The key in the future is
going to be large donors and BOD connections, as well as the area
of planned giving.
Publication of scientific articles about paruresis.
An attempt has been made to publish two academic articles. The first,
submitted to the British Journal of Urology, was rejected. The second,
co-authored by Joe Himle and Kat Walsh, has not yet been submitted
yet, but will be to a Social Work journal. Both should eventually
be published.
Website. The website has been redone. We are getting
about 800 unique hits (users) per day on the IPA site, 200 on the
SBC site, and the ARA site is getting much more traffic than both
of those combined.
Membership. In 2000 we had 150 members, in 2006
we have 1000 members, and our 2007 membership has topped 1200. We
have self-sufficient organizations in Australia and the UK. However,
support groups in Canada have collapsed. A workshop in Germany did
not happen in 2006, and Steve would like to see the creation of
an EU organization. Paruresis in China is a huge issue: while there
are a couple of active people, no organized activity exists.
Organizational structure. The board’s role
is going to have to change in the coming years, becoming much more
active in fundraising activities.
Speaking at professional conferences. Some time
during 2007 or 2008, Steve would like him or Carl to present at
the American Urological Association, American Counseling Association,
and SUNA (Society of Urological Nurses Association).
Legal issues related to people associated with
the SBC or IPA who might expose our organization to lawsuits. We
have had a couple of issues which could have developed into bigger
ones, but thankfully the IPA has never been sued. We need to be
vigilant about protecting both our members and the IPA organization,
itself; we need to keep a closer eye on support group activities
and keep our board more closely informed.
In conclusion, Steve reported that the IPA has accomplished a lot
in 10 years. He stated he is personally committed to it, that the
organization, as well as the SBC and ARA, will continue to exist,
but the level of his activity will fluctuate. He will no longer
be able to work for free due to personal issues. The issue that
looms large – how to put the IPA on a stronger footing –
is an organizational one that needs to be fully addressed.
SBC (founded 1994 – www.shybladder.org):
About 12-15 workshops have been offered this past year, and Steve
has seen more people on an individual basis, some of whom have been
willing to pay high fees. The work shops have been a great source
of new members and resulted in some long-term contributions. For
the next year, 4 regional workshops will be offered, and Steve would
like to sponsor a week-long workshop in a resort-type setting.
ARA (founded 1995 – www.americanrestroom.org):
The ARA has had its ups and downs, with a mid-year crisis, but seems
to be on a more level plane now. There seems to be some differing
issues related to board governance. However, the group has seen
enormous activity and has had a influence way beyond its size.
|
