Conquer Chiari Walk Across America 16

Conquer Chiari Community:

July, 2016 – Now that summer is in full swing, it is time to register for the Conquer Chiari Walk Across America 2016!  Please join us onSeptember 17th for this important day.  Raise your voice and be heard!  The deadline to guarantee a walk shirt is 8/15, so get your team together now and get registered:  https://www.conquerchiari.org/ccwaa16/ccwaa_register.asp

Of course, the CCWAA enables us to fund research projects such as the Chiari 1000.  Thanks to your participation, over 1,000 people have registered for the Chiari 1000, with over 700 completing all the self-report questionnaires and over 600 completing the self-report and the psychometric scales.  The only place we are lagging a little is with submitting MRIs and we are coming up with ways to make that easier for everyone.  If you started the Chiari 1000 and didn’t finish, please find the time to complete it.   If you haven’t signed up for it yet, please consider doing so:  https://chiari1000.uakron.edu/

We especially need more adult men to participate.The team at the Conquer Chiari Research Center has begun analyzing the preliminary data from this project and is finding some interesting things.  They are planning to submit 6-8 papers for publication in the next couple of months alone.

Also on the research front, as part of a recently launched Conquer Chiari funded study:

Participants are needed to provide suggestions and feedback on a therapeutic intervention for individuals with Chiari malformation Type I who have had decompression surgery and continue to suffer from chronic pain and/or headaches. In order to participate you must (1) have a diagnosis of a Chiari malformation and (2) have undergone decompression surgery in the past 10 years and (3) continue to suffer from chronic pain and/or headaches. The informational groups will take approximately 1.5 hours and participants will receive $20 reimbursement for their participation. You will need to drive to the University of Akron Campus to participate.  If you are interested, call (330) 972-6821.

Have a fun summer everyone.

 

Thank you!

 

Rick Labuda, Executive Director

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About AZSyringoChiari

Support Group for rare neurological disorders.
This entry was posted in 2016, Conquer Chiari Walk, Events, Uncategorized. Bookmark the permalink.

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