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July 31st, 2009 -
As part of our ongoing effort
to be as open as we possibly can about how the Foundation operates, we have
decided to profile our Board of Directors in the next few newsletter issues.
It may come as a surprise to
some of you that even though I [Rick Labuda] founded Conquer Chiari and as
Executive Director am responsible for daily operations, I am not on the
Board of Directors. When I formed the Foundation, I was advised that
it would be more professional to not be part of the board, thereby ensuring
objective oversight. It may also surprise some of you that there are
no patients or parents of Chiari kids on the board either; rather, our
small, active board is comprised of 3 experienced, business professionals
and a medical professional. Again, this enables an objective
evaluation of programs and priorities without personal biases and agendas.
I believe that our approach in designing the Foundation's oversight has,
over time, proven to be a good decision. Our Board of Directors is a
tremendous asset and has allowed us to maintain a high level of
professionalism in aspects of our operations.
In profiling our volunteer
Directors, we start at the top with our Board President, Mr. Rich Kushner...
What is your professional
background?
I would describe my professional background as being technology-focused
strategic marketing. I have a degree in mechanical engineering and practiced
as an aerospace engineer with McDonnell-Douglas on the West Coast. I
subsequently received a graduate degree in Management and Policy Analysis at
Carnegie Mellon, where I furthered my analytical skills, and then honed them
in operations research with AT&T. But my passion is communications and
messaging, and I began to move in that direction when I migrated into sales
management for a decade with AT&T. After than I began marketing-specific
work in the high-tech networking and telecom sector with FORE
Systems/Marconi. That has led to executive roles in marketing since then.
What skills and experience do you feel you bring to Conquer Chiari?
More than anything, I have the ability to place myself in the mind of the
recipient of any information that we’re sending them… to understand where
they’re at in their world, and how our message is going to be received by
them. As such, the constituents we serve, and the partners from whom we’re
seeking support and resources, can be assured that outreach will be clear
and gracious. I’ve also been fortunate to establish a great many executive
level relationships in both business and civic/political circles as a result
of my professional work. I greatly enjoy keeping those friendships active
and a number of them have yielded great support to Conquer Chiari.
Do you think Chiari is difficult to market and build awareness of?
Truthfully, no. In my professional experience it is easier to market
concepts that are new and as yet undefined. Chiari awareness is
exceptionally low for now, but the condition is NOT rare relative to other
diseases that are very well known (think MS, for example). And because
Chiari is both a serious condition yet relatively easy to understand (the
brain sack pressuring nerves in the spine), creating interest will not be
exceptionally difficult. Finally, because we can visually “show” what Chiari
looks like via MRI and other medical imaging techniques, we can develop an
understanding of the condition fairly quickly.
You have been involved with Conquer Chiari since the beginning, how does
it compare today to what you thought it would be?
When we began this non-profit organization, I will admit my principle
interest was the fact that we were establishing a completely “virtual”
entity… no buildings, offices, cubicles, etc. This was to be an exclusively
on-line and web-based outreach and this was at a time when I felt Internet
access was nearly universal and ubiquitous, so I was fascinated to see if we
could grow a community of interest. Well! I never dreamed that we could
achieve a reach and impact with the Chiari community as extensive as we have
so quickly. It is rewarding beyond words to know that we’ve created an
organization that is providing so many Chiari sufferers with so much
information and guidance that the fear and uncertainly that, only recently,
defined the diagnosis are now replaced with a degree of certainty, support
and education. Finally, I am continually amazed at the breadth of medical
and technical expertise that we have been able to engage in assembling
information about, and research into, Chiari.
What do you think Conquer Chiari does well?
We get information to victims and their loved ones very quickly and with a
great ease of access. We form and retain an ever-growing community of
dedicated and passionate workers in the cause of Chiari support, relief and
education. We know and have access to the best thinkers on this condition in
the world, and they in turn are invariably impressed by the work of our
Foundation… and as such give us great support. Finally, we have to have
about the lowest proportion of administration and overhead of any non-profit
foundation that I can think of… remember, this is almost exclusively a
“virtual” organization so the support funding we receive goes nearly
completely to the work and resources of Conquer Chiari.
In what areas do you think Conquer Chiari needs improvement?
As we develop enhanced credibility, and our strategic plan grows in scope
and ambition, we need to market ourselves more effectively. That means the
ability for the Board and our far-ranging supporters to have access to
collateral that they can carry to meetings with potential supporters that
clearly conveys what the condition of Chiari is, what we are doing to help,
and how we see the future for Chiari sufferers. Global economic conditions
are such that raising funds in the future is going to be more challenging
than ever – so having the optimal message and marketing appeal is more
important than ever.
What do you think Conquer Chiari needs to do in order to take the
organization to the next level?
I don’t want to seem glib here, but it will happen if we simply execute on
our strategic plan. The Board, in conjunction with Rick Labuda’s terrific
operational leadership, has developed a genuine sense of momentum and
ambitious goals that we believe we can achieve. Our community outreach via
events like the Walk Across America, the research conference, and even the
Chiari Book… all of these are the foundation of making Chiari a well known
and understood condition. Finally, we are striving to gain access to
research funding from the National Institute of Health, and I can’t
overstate the importance of that initiative. Relative to other diseases of
comparable frequency, Chiari is vastly under funded. We hope to change that
reality soon.
What role do you think the
board in general, and you as President in particular, play in an
organization such as this?
The board of any not-for-profit entity is, if possible, even MORE important
than the BoDs of commercial organizations. The work of Conquer Chiari
depends on the generosity of our donors – and they, in turn, donate because
of the trust they have in our organization. The board, and my leadership as
President, first and foremost has the responsibility to monitor and
periodically review the operational status of the organization. We then have
to continually assess the needs of the constituents we serve against the
services we are providing – are they aligned, are delivering on our promise,
what can we do tomorrow, what can we do better? These are the sorts of the
issues that we as a Board grapple with.
Since you have been involved
with Chiari, have you run into any (or many) people in your daily life who
have been affected by Chiari?
When explaining Chiari to people whom I meet that have never heard of
condition I often tell that that they will, sooner than later, see the
tell-tale scar on the back of the head/neck of a Chiari person. And sure
enough, I’ll hear from that person down the line that they recently saw what
I’d predicted and now understand what that person is going through.
Education is what started this organization, and that is real-world
education. But it is surprising to note that several families and friends
that I know have had children afflicted with Chiari – in one case, the
father was researching the condition, loved our site, and was astounded to
see his friends comprised the board of directors!
Do you think you could say
syringomyelia three times fast if you had to?
Perhaps if my life depended on it!
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