IPA’s 10 Year Retrospective

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.

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