January 31, 2007 --

Two thousand six was a great year for Conquer Chiari with the launch of the popular On-Line Meeting Place, publishing a Research Agenda, and awarding our first research grant.

Of course we are not going to rest on our laurels and I wanted to share with you, our constituents, our goals for 2007 as approved by the Board of Directors last month:

1. Fundraising - The Board had a lively discussion regarding whether it is time for Conquer Chiari to hold an annual fundraising event.  While many organizations do hold such events, they can consume a tremendous amount of time and in the end do not always generate much in the way of revenue.  In addition, while Conquer Chiari is headquartered in Pittsburgh, there is nothing special about Pittsburgh when it comes to Chiari.  Indeed, with our innovate approach which leverages technology, Conquer Chiari is truly a national (even international) organization.  With these points in mind, it was decided that a traditional dinner type event was not really in line with who we are.  Rather we decided to brainstorm fundraising ideas that could draw in people from across the country and play to our strength, namely using technology to our advantage.  Of course brainstorming works best with more people, so please don't be shy.  Let me know what your ideas are for some type of national fundraising event, and be as creative as possible!  As always, send your ideas to director@conquerchiari.org

2. Newsletter/Website - Naturally the newsletter will continue with what we hope will be six more strong issues in 2007.  In addition, we will continue to expand the website and hope to add more rich media content (pictures, video, powerpoint, etc.).

3. A Patient's Guide - I know I've talked about publishing a book for quite a while now, but given the progress I've made I am confident that Conquer Chiari:  A Patient's Guide To Chiari Malformation will be available in 2007.  Plus I've made a personal commitment to the Board to get this done.

4. Research Symposium - We are in the middle of planning what will be a truly great event.  A one-day professional research symposium to be held at the University of Illinois-Chicago in June, 2007.  The event will bring together top physicians and researchers from around the world to present their work and exchange ideas in a collaborative environment.  The response from people we invited to present was tremendous and an agenda will be put out shortly.  Personally, I will take the opportunity to promote the Conquer Chiari Research Agenda and try to get the research community focused on priorities which will directly benefit patients.  While the event will not be open to the public, we do plan to webcast the entire event (either live or delayed) so that anyone interested can see what is happening at the leading edge of Chiari research.

5. Award Research Grant - In 2006, the first Conquer Chiari Research Grant was awarded and we fully intend on continuing with this effort.  We are already more than halfway to having enough funds to award a grant in 2007 and I have no doubt we will be able to afford at least one (but hopefully more) grant.

6. Launch New Technology Based Program -  One of Conquer Chiari's core tenets is to leverage technology to deliver innovative programs which benefit patients.  In 2006, we launched the On-Line Meeting Place which has been hugely successful.  For 2007, we didn't want to pick an idea right away, but rather spend some time generating great ideas.  This is another area where we'd love your feedback.  Let us know what program/service you would like to see.  So far, the Board has come up with and discussed two really great ideas:

   1. A Chiari Community Board where people can pretty much post whatever they want:  pictures, stories, helpful hints, videos, etc.  The idea is not a traditional message board with threads, but more like a Chiari YouTube.

   2. Monthly Virtual Support Groups.  Conquer Chiari has been talking with a technology start-up which has an exciting service which would allow a large number of Chiari people to communicate over the phone essentially for free.  The idea is that Conquer Chiari would host a monthly support group meeting, potentially bringing in a guest speaker and moderating discussions on specific topics.  People would have to sign up in advance and space would likely be limited.

7. Formal Volunteer Program - I continue to be overwhelmed by the number of people who want to step up and make a difference.  Despite a couple of false-starts on the volunteer front, we are committed to launching at least one formal volunteer program in 2007.  The thinking is to set up a structured program for people to take Chiari literature to neurosurgeons and neurologists so that anyone newly diagnosed has something to take home with them and a place to go to get more information.  We have built a volunteer intranet so that we can keep track of who has visited which doctors and volunteers can exchange experiences and tips on what works and what doesn't.

It's an aggressive agenda, but one which I am confident we can achieve and continue to advance our mission.  However, we can not do it alone and as always the involvement of the entire community is critical.

Let me know what you think...

-- Rick Labuda

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