The momentum is building, I can feel it.

The Foundation and the Conquer Chiari campaign are moving forward and gaining steam.  Here's a look at what is going on:

Patient Education/Website:

• Traffic to the website continues to grow.  In August alone, there were nearly 14,000 visits to the site (meaning a person enters the site, this does not count each individual page hit), and to date nearly 2,000,000 pages of information have been viewed.

• We are planning to expand the Patient Education materials on the website, using an innovative, multi-media approach.  The Foundation has submitted several grant requests for the funds to accomplish this expansion.

• We are still working on designing, and plan on implementing, an on-line meeting place where people can safely exchange information.  This project was included in the above mentioned grant requests.

Awareness:

• The Chiari and Syringomyelia Awareness and Patient Education Sheets have been viewed more than 22,000 times!  While we can't say how many times they have been distributed, I am confident they have been used thousands of times to help spread the word.

• We are putting the finishing touches on a Conquer Chiari tri-fold brochure (thanks a million to Melissa Neff for her tireless graphic design work on this project!).  The intent is to post the brochure electronically on the website.  People can then print it themselves, or take the file to a local printer - like a Kinko's - for professional printing.  Complete instructions will be included.  The combination of the brochure and the Awareness sheets will make a nice packet to hand out at health fairs, etc.

• We are looking into offering Conquer Chiari Awareness Merchandise, such as T-shirts, mugs, pens, etc., on the website.  Small Conquer Chiari merchandise, like keychains, could be added to the information handouts in a Conquer Chiari packet.

Research:

• We have begun working on what we believe to be a unique document, a Chiari Research Agenda.  The Agenda will evaluate the current state of Chiari research and identify key issues which need to be addressed, and the resources required to make advances in each area.  The Agenda will be developed in conjunction with the Conquer Chiari Scientific Advisory Team and will eventually be made public.

• We continue to expand the Scientific Advisory Team with leading experts from a wide range of disciplines.  We believe that to date a multi-disciplinary approach to Chiari has been missing, and we hope to address this.

• As we continue to raise money and develop our research plans, it is our goal to begin officially funding exciting new Chiari research sometime in 2006.

Volunteers:

• In the past few weeks, more than 50 people have signed up to fight back and be Conquer Chiari volunteers!

• We are in the process of brainstorming which programs/services we should implement first.  In the next couple of weeks, this will be decided, and teams will be formed to create the programs.  The completed programs will be put on the website, so that everyone who wants to volunteer will be able to choose from a number of different ways to get involved.

• People are also beginning to organize and launch Conquer Chiari fundraisers.  I would like to particularly thank Ray D'Alonzo - who will be running in the Air Force Marathon this Sat. (9/17) to raise money, and Laurie Sobas, who is launching Coins For Chiari in Columbus, OH.  Other people have sent emails saying they are starting to plan fundraisers, I can't wait to see what they come up with.

• We are looking for two people willing to step up and help with the volunteer and fundraising efforts.  The first person would act as a Volunteer Coordinator, and be responsible for making initial contact with people when they sign up to volunteer, help them understand their options in volunteering, make an appropriate selection, gather feedback on the programs, and help the volunteers however they can.  The other person would act as a Fundraising Coordinator and help people who want to hold a fundraiser decide what to do, provide advice, and help with logistics when possible.  If anyone has experience in these areas and is interested in serving in this capacity, please email me at director@conquerchiari.org, or call 724-940-0116.

Media Coverage:

• Ray's marathon run, and Conquer Chiari, were featured on the local news in Ray's hometown of Cincinnati, OH.  We are working on getting a video of this segment up on the website for everyone to see.

• We are also working on getting a Conquer Chiari story on the local news in Pittsburgh, PA (where the Foundation is located), so stay tuned.

• If anyone has a Public/Media Relations background, and would like to help with the organization's media strategy, or help promote individual stories and events, please let me know.  We can use you!

The momentum is building, and with your help, WE WILL WIN!

--Rick Labuda