Message From The Editor:  A Day For Chiari...

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September 30, 2008 --

Wow, what a day.  So many people, so many great stories.  The 1st Annual Conquer Chiari Walk Across America was a success, a big success.

At 20 sites across the country, a couple thousand people gathered to walk, talk, raise awareness, and raise money.  Thanks to the tireless efforts of the site organizers, so much was accomplished:

1) Over $165,000 was raised for research, and the checks are still coming in.  I will post a final tally, along with site totals, in a week or two.  I'm also proud to say that our costs were less than 10%, so more than 90% of that money will go directly to fund research projects.  At the upcoming research conference, Conquer Chiari will announce a joint call for research proposals with Column of Hope.  The Walk funds combined with the Pediatric Gala at the end of October should give us at least $200,000 to award.  Combined with Column of  Hope's funds, we will be able to announce a quarter of million dollars in research funding.  Quite an accomplishment.

2) The Walk raised awareness through numerous newspaper articles, radio segments, and event television coverage.  In addition, many organizers were successful in getting their states to recognize September as Chiari Awareness Month.  Conquer Chiari will put together a map to show which states have passed an awareness resolution and which ones we still need to work on.

3) One of the best benefits of the Walk was brining together people with Chiari.  So often Chiari people feel alone and like no one understands.  Meeting others and sharing stories is great therapy for the spirit.  At the Pittsburgh walk, there was a 10 year old boy named Taj who was so happy to be there.  He had surgery when he was three and his family drove in from Ohio for the walk.  When he won my book (A Patient's Guide) at our raffle he ran up to get it with a huge smile on his face.  It was obviously a special day for Taj as I am sure it was for many others across the country.

4) The Chiari community is energized.  I have been at this for more than 5 years and I have never seen the Chiari community more energized than it was by the walk.  It was as if the walk tapped into a pent up reservoir of energy and emotion.  I am confident that this energy will carry forward and plans are already being made for the walk to be even bigger and better next year.

It goes without saying that the entire Chiari community owes the site organizers a big thank-you, so if you know these people, or run into them in the future, let them know what a great job they did and how much they are appreciated.  I want to extend my personal thanks for all their hard work:

Sheryl Shipp, Debbie Juengel, Vonda Maxwell, JoAnne Hobbs, Katherine Hart, Jackie Meadows, Erin McGrath, Glen Miller, Monica Griest, Tharilyn Bunker, Stacy Thorn, Darlene Watkins, Erin Ruiz, Casey Gray, Shannon Schroeder, Brian Murphy, Jodie Churchill, Deb Ladue, Penny Tierney, Holly Norris, Merideth Rought, Carrie Marenberg, Denise Siegfried, Rachel Sell, Heather Freed-Oliver, Diane Miller, Andrea Pendleton, Stacy Jones (If I forgot someone, please don't be mad, just let me know).

And an extra big thanks to Melissa Neff for the many hours she spent on the shirts.

And of course thanks to all who walked and all our generous sponsors.

In this special issue of the newsletter, you can find just a few of the many stories and images from the walk.  Iif you have a story or thought on the walk, please share it by emailing director@conquerchiari.org

The Walk Across America was an important step in our campaign against Chiari and we should all be proud.

Thank you.

-- Rick Labuda

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