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CSF: Chiari & Syringomyelia Foundation
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CSF SEA Board member Dr. David Limbrick was awarded $2.8million dollars from the Patient-Centered Research Outcomes Initiative (PCORI) in 2015 for his study to determine whether posterior fossa decompression is more effective for patients with or without duraplasty.

Watch Dr. Limbrick explain how a randomized controlled trial (RCT) works, what his is looking to find out, and how YOU can become an official "researcher"!
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Dr. Cormac Maher gives an overview of the state of #Chiari malformation knowledge. What do we know? What do we wish we knew? What will we know soon? And, importantly, how will all this knowledge help patients?
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Check out the 2016 CSF unite@night walk video!
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#uniteatnight with us to raise awareness and critical funds for educational programs and research projects that will help the over one million families affected by #Chiari malformation, #syringomyelia and related disorders. Help raise #1millionin2016!

Visit: http://csfinfo.org/csf-unite-night
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"Nerve pain tends to not respond as well to #Chiari #decompression as #headache. In my experience, surgery can even change the way the condition affects you... for example, I'm learning now that my patients have itch." Watch Dr. David Limbrick explain Chiari and #syringomyelia treatment in 2016.
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#Chiari, #syringomyelia and related disorders have become known as "invisible disabilities," or some debilitating condition that is not easily apparent to anyone but the individual suffering from it.

Wayne Connell, Founder and President of the +InvisibleDisabilitiesAssociation, envisions a world where there is no longer anyone struggling with pain and disability that others cannot or refuse to see.
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I want to say, I had Syringomylia, the worst case! In 1 year, 2 months, I got rid of it! No joke! I have before and after MRI...my email,,,littlecoconut1@yahoo.com 
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Problems of #cognition are beginning to become of interest to many physicians in the field, but like Dr. Grant mentions in his presentation, we're at the starting line and much more #research needs to be done!
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Have them in circles
125 people
Michael Harms's profile photo
Mayfield Brain & Spine's profile photo
Kristinas Kjeks's profile photo
Cathy Poznik's profile photo
Bronwyn Wood's profile photo
Chiari Malformation's profile photo
Scott Pfefferle's profile photo
Janet Greenley's profile photo
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Dr. Michael Healy discusses #physicaltherapy in patients with #craniocervicalinstability who have undergone #Chiari decompression surgery and provides some live demonstrations.
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Glow Frenzy is offering a cool fundraiser for CSF! Order these color-adjustable LED shoes using the coupon code "CSF25" to get 25% off and have a portion of the proceeds donated directly to CSF.

This can be a fun way to bring your colors to unite@night walks and to spread awareness while you rock these light up shoes! Visit www.glowfrenzy.com to order.
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Every CSF Chapter meeting features an educational lecture from a specialist and a reception where patients, families and friends can share their stories.

Check out some of the highlights from our most recent CSF Chapter Kickoff at St. Louis Children's Hospital in St. Louis, MO!
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"It is so frustrating to go to the doctor, be in support groups, and hear from others what I CAN’T DO... So today, I hope you will take a few moments to read what we CAN do."

Really refreshing take on life with #Chiari, #syringomyelia and related disorders... or #chronicillness, in general.
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Can you tell we're excited to kick off the 2016 #uniteatnight season? You can host an awareness walk in your hometown for #Chiari, #syringomyelia and related disorders. Learn how here: http://ow.ly/Y8nVx

#1millionin2016 #bethehope
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People
Have them in circles
125 people
Michael Harms's profile photo
Mayfield Brain & Spine's profile photo
Kristinas Kjeks's profile photo
Cathy Poznik's profile photo
Bronwyn Wood's profile photo
Chiari Malformation's profile photo
Scott Pfefferle's profile photo
Janet Greenley's profile photo
Jan Grizzel's profile photo
Contact Information
Contact info
Phone
(718) 966-2593
Email
Story
Tagline
Advancing knowledge through research & education of CM, SM & related disorders.
Introduction
The Chiari & Syringoymelia Foundation is a national 501(c)(3) organization committed to disseminating accurate and current information about the treatments and best practices surrounding the management of Chiari malformation (CM), syringomyelia (SM), and related disorders.

Mission
To advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related disorders.