Carries Chiari Connection

A connection for Chiarians

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September Chiari Walk 2008

I wanted to thank everyone for the participation and the help with the Conquer Chiari Walk in Urbana, Ohio.  I also want to thank Merideth Rought, my partner in crime (yea right, right Mer?) for taking on a walk in Cincinnati, Ohio too after realizing that Ohio needed more than just one little walk in Urbana...a town where most people say, "Where????". Maybe next year we can have a third walk in Ohio and have it more up North so that people can choose a place close to where they live rather than drive too far.

I felt very lucky to be asked to coordinate the walks in Ohio and I felt so lucky to have the help and support for the walk.  Although it probably cost me more than I expected, I would not change a thing! The things that weren't so perfect were a learning experience and the parts that were terrific...well those parts where great!  I met several others who have Chiari and even got to meet little Kaleb who is the youngest Chiarian that I've ever met. He spent most of his time taking it easy in his stroller and getting lots of pictures taken with all the pretty girls around! I think he had it made in the shade! I was so please to have met the others with Chiari because I've only met a handful of people before this that have Chiari and it's always a comfort to meet people who KNOW how you feel! That's one of the biggest problems most of Chiarians face; people either not understanding us or minimizing our pain and symptoms.  Only meeting someone who has truly walked in our shoes, allows one to feel at ease knowing there is someone who understands!

There were even several people who did not have Chiari or even have a Chiari family member that attended the walk to either walk for support or come to learn more.  There were many walks all around the U.S on that very day and I believe this was the biggest awareness attempt of all time. Visit ConquerChiari.com to see the Chiari Walk locations and the turn-outs. I also want to thank Rick Labuda for thinking of this huge awareness event and having the patience to listen to all our questions and concerns as we ventured into this challenge! It was definitely a challenge but one that I was so fortunate to have!  I look forward to seeing what next year brings! I am unsure if I will be a part of the preparation next year but I will be a part of it in some way.  I cannot seem to avoid the events and activities surrounding awareness for Chiari!

Be sure to visit the photo gallery for pictures of the walks in Ohio but also of the many others! Great job to all the volunteers who took the time and accepted the challenge to host a walk in their state and commit to a very unselfish task that I know personally took so much out of us whether you had Chiari or not.  It was a very big job and lots of work involved and everyone did such a great job! I couldn't be more proud to be on a team with such dedicated, selfless, and very creative people as the people I had the privilege to work with on this awareness campaign!

~Carrie

A special thanks to:

 My husband James who ran all my errands as I maintained my full-time job, picked up all the last minute stuff, and made sure everything was exactly how I wanted it! Also, for understandingthat all the time I spent away from him and the children was for something that was so importantto me and for the massages when I thought I couldn't move another muscle!

Thanks to my wonderful children who always seem to find the good in me when I can't.  They all helped with the walkone way or another.  I am sure they enjoyed blowing up the balloons and trying to hold onto them as the wind kept trying (and succeeding) to blow them away. It couldn't possibly be the helium tank that attracted them to help, was it??

Merideth Rought, (it never feels right without you) Thank YOU!!!!!

One of my best friends, Andrea who I am 100% sure I couldn't have done it without YOU!

Also to a wonderful friend and dedicated supporter, Bob Jones

Also a big thank you to the Urbana High School Girls Tennis Team and coach Mrs. Eickhoffwho collectively went out to gather sponsors to sponsors the girls as they walked for our cause!

I also want to thank Bob, (who works for the city park) who helped us with providing a place at the Urbana City Park and bringing out tables, trash cans, and anything else we needed even after we said we had everything and was set! He and the guys there were awesome and didn't hesitate to help us at any point!

There were many more like Jeannie Jenny (Her daughter with Chiari could not make it so she drove alone) who drove all the way from Kentucky to be at my walk just to be able to meet meand to help us where we needed the help.  We were grateful because we thought we had everything covered but ended upneeding her help and she did it without hesitation and with enthusiasm! I am so happy to have her in my life!

Of course I cannot forget to mention a very good friend, Michelle and her mother who drove all the way from Clevelandto attend and also to help! Although they got lost on the way here (sorry...couldn't resist!) they made it before everyone left! (heeeheee bless their hearts!) This was also a reunion for Michelle and me because we also attended elementary and junior high together but only found each other recently and got reacquainted online before finally getting to meet eye to eye after 25 yrs!

I apologize if I left someone out because there were so many who helped in one way or another! I felt very good that day inside and it seemed to over power the physical pain I had. Thank You All So Much! See you next year!

 

 

 

 

2007 Chiari Awareness Event in Ohio

A special thank you to all our guests and the doctors who attended our event.  The turnout was great and the feedback was awesome!  I hope we had a chance to meet every single person who attended.  It was difficult to keep up with the amount of people there but it's so great that so many people were able to attend!  Thank you to everyone who shared their stories and time for our event.

Carrie

Thank you so much to each of our speakers and their assistants:

Dr. James Bryant

Dr Francesco Mangano

Dr. Raphael D'Alonzo

Dr. John Tew

I am excited to get so many responses after my article was published in the Dayton Daily News and the Springfield News Sun Papers.  Thank you all for being so supportive.

Click http://www.freewebs.com/carrieschiariconnection/eventsandreviews.htm to see more about the event!

Please tell us what you thought of the event:

Extreme Home Makeover "Chiari Family episode"

The Extreme Home Makeover featuring the Carter family will be airing again on April 6th...be sure to tune in and also tell everyone you know so that they can get a better understanding of Chiari and what Chiari people go through! If the dates change I will be sure to correct the date but this information came directly from Julie Carter herself.

Article about the boy who couldn't sleep...chiari

This page will change from time to time.  This is where I will add information from my members who have joined my website.  I will also display the questionaire results from time to time depending on how many have been submitted.  I hope this page will be fun and of interest.  As always you can make suggestions to me.

I found this on U tube

I found this little boy on U tube that has Chiari, his name is Nehemiah. It says that Nehemiah had brain surgery a few months before this video and is currently in speech therapy to help with a nasal "snort" (you can hear it if you listen closely).  Hope you enjoy it as much as I do.

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