November 30th, 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.

This month, meet the newest member of our Board, Dave Lee, Vice President...

What is your professional background?
Like Rich Kushner, my professional background is heavily technology-focused. I have an accounting degree from Boston University, and have started my professional career in accounting, but even during that time, much of my time was spent automating information systems. I subsequently worked primarily for small businesses, including a non-profit, leveraging the emerging internet communication infrastructure as a way to get information into the hands of the intended recipients. In 2000 I joined Marconi (which subsequently was acquired by Ericsson) and moved to Pittsburgh. I recently joined DynaVox Mayer-Johnson, a company focused on using technology to allow those who cannot speak to have a voice through speech generating software. I am product manager for several of their appliances and see real opportunity to make a difference in how people think about these devices.

What skills and experience do you feel you bring to Conquer Chiari?
I've known Rick Labuda for about a decade, and I think it's fair to say that Rick's engaging style is a big part of why I'm involved with Conquer Chiari. Even before I joined the board of Conquer Chiari I spent a fair amount of time thinking about, and discussing, how to use technology to further the goals of his organization. CC has two main charters; first, to educate doctors, patients and families on Chiari malformations, their causes, and current protocols for treatment. The second is to fund research to improve understanding of both the causes of the disease and how it is treated. There was a time when a printed newsletter or magazine was the best way for an organization to reach constituents, but the cost and limited reach have been replaced with the web and the massive reach that it represents. So reaching the first goal of getting information into the hands of those that need it is magnified by the reach that electronic publishing represents. The second goal, funding continuing research, relies less on information technology, and Rick, Diane Mueller, another board member, and our Scientific Advisors play a much more prominent role.

What technologies are on the horizon that you think Conquer Chiari may be able to utilize?
From my perspective, using social networks like Facebook in combination of a patient registry presents a good opportunity to build a unique tool for both patients and researchers that doesn't really exist for any patient advocacy organization today. The ability to link people socially in a positive way can really help a person who feels isolated by a new diagnosis to understand quickly that there is a great support network out there.

What do you think Conquer Chiari does well?
Conquer Chiari, to me, is a great organization because it is entirely focused on just a few crucial goals: providing information to patients and their families, raising both public and medical community awareness, and sponsoring key research. I think that CC does a good job of keeping that focus without allowing other potential distractions to defocus the mission. I also recognize that CC has done a fantastic job of raising awareness without the kind of marketing budget that many organizations have.
 

In what areas do you think Conquer Chiari needs improvement?

I think most of the answers are along the same key points as the previous question: the biggest areas for improvement are to continue the reach and awareness that CC is generating. We have recently been reaching people outside the U.S. with the information we are providing. It think we need to recognize the reach that we have and find a way to leverage that in a way that improves patient education and care in that larger context.

What do you think Conquer Chiari needs to do in order to take the organization to the next level?
I think that the three things Conquer Chiari needs to do to go to the next level are:
1. Continue to build on the success of the Walk Across America event. There's a real opportunity to expand the number of events on that day as well as increasing the awareness within the communities that are hosting events.
2. Continue to expand successes in Washington DC with legislation and work at NIH
3. Explore whether it makes sense to get involved with a trade or medical society event. I just returned from a conference related to my “day job” and was reminded that driving awareness in that direction could help get companies who make medical equipment to start thinking about what can be done to better detect and treat Chiari.

What role do you think the board in general, and you as Vice President in particular, play in an organization such as this?
Conquer Chiari has a great executive director in Rick Labuda. The role of the board is to help sift through the hundreds of possible things Conquer Chiari could be doing to hopefully find the most impactful ways to direct its resources. The second thing the board does is to pitch in and help on occasion, since Conquer Chiari runs a lean organization. For example, I worked with Rick to help design and launch the Conquer Pediatric Chiari website this past year, and it was very rewarding to see it go live.

You attended the Walk in Pittsburgh, aside from the rain, what did you take away from that experience?
The sense of community within the Pittsburgh Chiari friends and patients sphere is really great. The turnout was fantastic, especially considering the rain and cold. It would have been really easy and actually quite understandable if people just stayed home. It really speaks to the commitment level of the people involved with this organization. As I am answering this question we are well into November and we would've been lucky then to have the kind of weather we're experiencing now. Maybe next year we should schedule it for early November and order up some Indian Summer!

Do you think you could say syringomyelia three times fast if you had to?
Actually, yes! ...but it could help if I was allowed to pronounce it differently.

 

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