CSF unite@night Mesa Walk, October 1st

https://www.facebook.com/events/1673039349684383/  fundraiser facebook page

Boston Market Fundraising Night for Chiari & Syringomyelia Foundation

Friday, September 16, 4:00 pm to close

3435 S. McClintock Dr. Tempe AZ 85282-5883 

Hosted by Alicia Aguirre, local CSF Walk co-ordinator

                                Help us raise money and enjoy a delicious meal:)

Bring your appetite and a ticket! Event Ticket required for CSF

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unite@night Walk Event Information:            

Register at the facebook address OR at http://unitenight.kintera.org/mesa

https://www.facebook.com/events/166258230452587/

Saturday 6:00 pm  check-in  Walk-7:30 pm

Walk distance, 1 mi. Wear your own colors!

 

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CCWAA16 Arizona

https://www.facebook.com/Conquer-Chiari-Walk-Across-America-Arizona-555452821154572/

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Conquer Chiari Walk # 8 Arizona

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Make 2016’s Walk Bigger and Better to Conquer Chiari and Syringomyelia!

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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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Conquer Chiari Walk Across America, Arizona 2016

Want to Know More?

The Conquer Chiari Walk Across America is a series of local awareness and fundraising walks held across the country on the same day. The walk is held the third week of September (Chiari Malformation Awareness Month) every year.  Walk planning begins in January. Check out the links in the left side bar to find out the History of the Walk 2008-15, Highlights from CCWAA’15, Walk Day Videos, and our Wall of Fame for teams that raised $1,000 or more.

CCWAA has been held in all but 5 states since 2008. Hawaii, North Dakota, Rhode Island, South Dakota and Vermont. It is our goal to reach ALL 50 states!

https://www.facebook.com/Conquer-Chiari-Walk-Across-America-Arizona-555452821154572/

 

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Corporate sponsorship

https://www.conquerchiari.org/ccwaa16/ccwaa_sponsor.asp

Register to Walk

https://www.conquerchiari.org/ccwaa16/ccwaa_register.asp

Donate or sponsor a walker

https://www.conquerchiari.org/ccwaa16/ccwaa_donate.asp

The official 2016 Walk t-shirt! If you donate or raise at least $25 on your personal fundraising page you will get a free t-shirt at the walk! Please pre-register at www.conquerchiari.org
and don’t forget to select a t-shirt size. There are no guarantees on extra’s so be sure to save one for you by pre-registering!
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AZ Syringo Chiari Support Group Meeting!

   11407234_451757808323119_824111946604854408_n Our July meeting has been moved forward to June 11th to schedule a speaker, Dawn Byrd, Psy.D  Dr. Byrd will speak to us on the topics of “Anxiety and Depression”.

We’ll meet in the Mercy Conference Room, St. Joseph’s Hospital, Phoenix at our regular time, 11:00 am to 1:00 pm and guests are welcome to attend. Parking is available in either the 3rd or 6th Ave. Garages.

 Here is a short bio of Dr. Byrd, as per her website, reposted with her permission.

Dr. Byrd is a native Arizonan from Tucson who is now living and practicing in the Phoenix metropolitan area. She graduated with numerous honors in the field of psychology from Grand Canyon University. During undergraduate school, Dr. Byrd served as the Psi Chi, the International Honor Society in Psychology, President. After graduation, Dr. Byrd pursued her professional degree from Arizona School of Professional Psychology at Argosy University, and received her Doctorate of Psychology (Psy.D.) in 2010.

http://www.PhoenixPsychologists.com

Please be prompt!

 

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May: Syringomyelia Awareness Month!

National Syringomyelia Awareness Month
Here is a little info about how the organization that started it all.

The ASAP logo was designed by founder Barbara White in 1988. The emblem was designed to represent both her home and her diagnosis. The center star denotes the State of Texas. The innermost design embodies the brain, spine, and nervous system.

The ASAP acronym signified the need for information, awareness and a cure as soon as possible. The organization was originally The American Syringomyelia Alliance Project, Inc but changed its name to include Chiari in April 2009. ASAP has always provided information on both Syringomyelia and Chiari and changed its name so that others would know.

In Memory of ASAP’s co-founders, Barbara & Don White.

www.ASAP.org

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‪#‎maysyringomyeliaawarenessmonth‬

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                                              Arizona Proclamation of May Syringomyelia Month
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Educational Pamphlets available!

http://www.ninds.nih.gov/

Spanish language publications are here, available at our AZ Syringo Chiari Support Group Meetings, next scheduled one is 6-11-16 @ St. Joseph’s Hospital, Phoenix.

 

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Also, English versions of the same pamphlets are available and in addition, we have copies of the following or also online http://www.ninds.nih.gov/

CCI05052016_0001CCI05052016_0002CCI05052016_0003 For additional booklets, go to http://www.ninds.nih.gov/

Posted in 2016, Educational and informative news, Related Disorders, Uncategorized | Leave a comment