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March 31st, 2009 --
Conquer Chiari, through the actions
of myself, our Board of Directors, and our volunteers, is dedicated to
maintaining the highest level of professional standards. In order to
do this, we continuously strive to be objective, transparent, and efficient
in our actions.
On a personal level, I believe this
is extremely important and I take it very seriously. As you are all
aware, the news recently has been all too full of corruption and unethical
behavior, and the non-profit sector is no exception. It is an
unfortunate fact that unscrupulous people have historically used non-profit
law for personal gain and benefit. My home state, Pennsylvania, is in
the midst of a corruption scandal which partly involves state legislators
using bogus non-profits to direct tax payer money to their own interests.
Because non-profits, especially
smaller ones, are not rigorously scrutinized, I feel the burden is on the
management team of the non-profit itself to avoid, in every way possible,
any impropriety. The result of this is that Conquer Chiari may say no
to certain fundraising and programming activities which we feel are not
appropriate.
For example, one of the most frequent
questions I am asked is for the name of a Chiari "expert". Time and
again I decline to answer that question, and have taken some heat for it in
the process. But the reality is, there is no objective definition of
what a Chiari "expert" is. What makes someone an expert and who is to
say that a patient should go see them instead of someone else? To me,
these questions can not be answered in an objective way, which is why I don't
answer them and I tell people they must make up their own minds. If
they want to see a surgeon who does a lot of Chiari surgeries, the names are
not hard to find, but many would prefer to stay close to home. Either
way, Conquer Chiari tries to provide the information necessary to make an
informed decision.
Objectivity is also why Conquer
Chiari does not utilize a formal Medical or Scientific Advisory Board.
I am proud to say that we have begun to award substantial research grants
and organize professional research conferences. As a funding
organization, and because the Chiari research community is fairly small, we
feel it is important to avoid any potential conflicts of interest. So
instead of a formal board, we utilize the extensive contacts we have
developed over the years to seek input as needed from a variety of experts
in an ad hoc fasion.
Transparency comes into play when
talking about finances and fundraising. Every year our finances and
controls are audited and our financial filings with the IRS (990 forms) are
posted on our website in a timely fashion. In fact, the 2008 990 was
just posted and can be found by clicking on About Us from the home page.
The 990 form shows how much money we brought in, our total expenses, what
expenses went to support programs versus overhead, and other useful
information. If you have never done so, I encourage you to review our
990 and the 990s of any other charities you are interested in.
In terms of fundraising, over the
past 5 years I have learned that fundraising is a complicated subject, where
each state has its own set of rules (which are not always clear) and that
there are many people trying to bend those rules and stretch the limit.
Because of this, and so that it is clear to people who donate to Conquer
Chiari where there money is going, in general we do not get involved with
joint fundraisers. In other words, if someone is having an event to
raise money for medical expenses and they say they want to give a portion to
Conquer Chiari, we would prefer not to be involved (if that person wants to
donate after the fact, that is fine, but it should not be marketed as a
Conquer Chiari fundraiser). Similarly, I have been contacted numerous
times by fundraising agents who try to operate at the edge of the law;
because of this we also try to avoid fundraising activities which are part
of a for-profit situation. There are many ways to raise money (as our
walk last year showed), and we feel it is easier, less risky, and more
effective to stick with simple events which are clear to those involved.
Because of this, and to comply with state laws, we require that anyone
interested in holding a fundraiser provide us the details ahead of time in
an application that must be approved. Similarly, and to be
transparent, many states require a specific disclosure (or wording) on any
solicitation in their state. This is why there was a second page on
the sponsor form for the walk last year. Maybe we are passing up money
in being selective about our fundraisers and being picky about sticking to
the letter of the law, but I think it is more important to do things the
right way.
Which leads me to efficiency, which
is of course the right way to run an organization such as this. One of
the benefits of transparency is that it is easy for everyone to see how
efficient (or not) we are at doing our job. For example, in 2008
Conquer Chiari brought in about $386,000, including more than $200,000 for
research (thank you all!), and our total expenses were $148,000. Now
of the $148,000 in expenses, $114,000 were spent directly on programs, such
as this newsletter, the book, certain aspects of the walk, and the
professional research conference. The flip side of this is that only
$34,000 was spent on overhead and fundraising. So, in terms of overall
expenses, our overhead was 23%, which isn't bad, however, it is a bit skewed
because of the timing of our research grants. If we had awarded the
$200,000 in grants in 2008 (which will be awarded in June), our overhead
would have been 11% of expenses which is very good. Another way to
look at the overhead number is to say that it represents only 9% of our
total revenue for the year, which is extremely good. I invite all of
you to compare our numbers with other organizations in the Chiari space or
for similar diseases. Combined with what we have accomplished, I am
proud of how efficient our organization is.
The upshot is that we try very hard
to not cut corners and to do things the right way (such as registering with
the states where we are holding events). Yes, sometimes this slows
things down and can be frustrating for people, but since we are working for
such a good cause, we feel it is worth it.
--Rick Labuda
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