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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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