I wanted to take this chance to update everyone on what is  happening with the non-profit organization (C&S Patient Education Foundation) and discuss some of our plans for the immediate future:

• As you know if you're on the email list, we sent out a call for volunteer writers.  The response was much larger than anticipated and I want to extend my heartfelt appreciation to everyone who responded.  I also want to ask for patience as I get organized and try to utilize everyone's talents.  I'd like to especially thank the people who participated in the August newsletter:  Jessica Goldner, Melissa Neff, and Shelley Minturn.  They suffered through my mistakes and thanks to them, the process will be much smoother in the future.

• I'm looking into setting up a section on the web site for volunteers (an extranet for the tech savvy).  This would be a secured area where I can post projects, people can sign up for volunteer work, groups can exchange ideas, etc. 

• To build on the volunteer experience, I am going to implement a volunteer form on the web site.  This will simply allow people to register as volunteers and give me an idea of their connection to CM/SM and just as importantly, what skills and experience they have.

• We are hoping to receive our 501c3 recognition from the IRS this month.  This will allow us to kick off our fundraising efforts and add credibility to the organization.

• Once we obtain the 501c3, we will launch our Corporate Sponsorship Program.  This program will seek donations from companies which will be recognized on the main page of the web site.  We intend to target companies whose products and services are involved in CM/SM.  I am putting together a one page overview of the program (a PDF file) which will be posted on the web site.  This way, ANYONE has the information necessary to approach a company about sponsorship.  I will send out more info when we launch.

• Scott Emery, a volunteer, has put together a terrific glossary based on the newsletter articles.  This will be posted shortly.  Thanks, Scott!

• In the next couple of months, we will be putting together one-page awareness sheets for Chiari and syringomyelia.  These will be posted on the web for easy download and printing.  They are intended to share with family, friends, and co-workers, or to be distributed at health fairs and doctor offices. 

• In the next few months, we will be working on a series of short (4-6 slide) presentations on subjects such as symptoms, surgery, pediatric issue, dealing with pain, etc.  The presentations will contain the current knowledge in each area, synthesize what is in the newsletter articles, and offer practical tips.  I believe they will really round out the site and be a wonderful resource. 

• In the next few months I also intend to approach the AANS  and the CNS (the neurosurgical professional societies) about creating a list of surgeons familiar with Chiari and syringomyelia.  Currently, the societies do not recognize CM/SM as sub-specialties, so the criteria for such a list is not clear.  But if we can get the professional societies involved, I believe we can answer one of the most frequent questions people have, "Where can I find a doctor that understands this?"

• I am always looking for ideas for articles or new features for the newsletter, so please don't be shy!  There are no bad ideas.

Thanks again to everyone who volunteered, I will try my best to get everyone involved.

--Rick Labuda