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Chiari & Syringomyelia Foundation
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AMAZING VIDEO! +Eat Your Kimchi really gets #EDS  and living with #chronicpain . Thank you for bravely coming forward, raising #awareness  and explaining how to #cope  for the millions of people who have to manage their pain in silence around the world!
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Where will you #DineForACure ? At home? In a restaurant?

No matter where you dine out, be sure to spread #awareness  and knowledge about #Chiari , #syringomyelia  and related disorders! Contact us for more information on how to get started!
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#Chiari , #syringomyelia , #EDS , #dysautonomia … all these related disorders… it's hard to get a good diagnosis when your symptoms are puzzling… to you AND your doctor!

Join us as we #uniteatnight  this June to help spread #awareness  and raise important research funds! Learn more about how you can help others fill in their own medical puzzles: http://ow.ly/Is8aZ
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"It’s the desperate-for-relief look in her eyes and the way that every move she makes is an ordeal. Even the small groans and grunts she regularly emits are more agonizing in their restraint than a full-out scream would be."

What do you think about the movie #Cake  with Jennifer Aniston and its portrayal of someone suffering from #chronicpain ?
What starts off as a medical drama with a healthy nasty streak isn't able to resist slapping a bandage on all the badness in the end.
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The 2015 #uniteatnight  season is already underway, and this little one wants to know if you're coming along for the ride! Learn more or fill our your own unite@night walk application on our website: http://csfinfo.org/csf-unite-night/

And follow CSF on +Instagram (@uniteatnight) to keep up with all the excitement of walk season!
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Dr. Fraser Henderson discusses the neurosurgical management of hereditary disorders of connective tissue.

#neurosurgery #hypermobility #ehlersdanlossyndrome #EDS #instability #CCI
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Have them in circles
96 people
Heather Harrison's profile photo
Jackie Gavin's profile photo
Kris Stewart's profile photo
Anthony R Gentile's profile photo
Kathy Kahlstorf's profile photo
Amanda Grube's profile photo
Amanda Rodgers's profile photo
Tyler Zipped's profile photo
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The 2015 #uniteatnight video is out!

Unite with us this June as we help solve the puzzle that is #Chiari malformation, #syringomyelia, and related disorders such as #EDS, #hydrocephalus, #IIH, #POTS, #dysautonomia and many more!
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Watch Dr. Fraser Henderson and Dr. Claudiu Austin give an informal presentation and host an interesting discussion about #PANDAS, #paraneoplastic #limbic #encephalitis and other #autoimmunedisorders at the CSF Chapter meeting in Lanham, MD.
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Thanks to everyone who has ever participated in a unite@night walk, we can finally say that the over one million American families affected by #Chiari , #syringomyelia , #EDS  and more have started to boost #awareness  and understanding about their conditions… but there's still so much misinformation and so much to be done!

Fill out an application to host a #uniteatnight  walk/solo walk and get these disorders recognized in YOUR hometown! 

Learn more: http://csfinfo.org/csf-unite-night/
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Interesting read out of the NIH Blog today: "… #chronicpain  spans a multitude of conditions, presents in different ways, and requires an individualized, evidence-based approach to manage."

Learn more about how we are moving towards "individualized" #medicine  here: http://ow.ly/I1xJF
The term “silent epidemic” sometimes gets overused in medicine. But, for prescription opioid drugs, the term fits disturbingly well. In 2012, more than 259 million prescriptions were written in the...
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Keep your #CSFresolution  alive through February and join us as we #DineForACure !

Any time in February, host either a fundraiser at a local restaurant or your own private party to educate and spread awareness to your local community members, family, friends and co-workers about #Chiari  malformation, #syringomyelia  and related disorders!

Get more info on how you can help by contacting Cathy Poznik at cpoznik@csfinfo.org or by phone (330) 998-6195.
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Dr. Myles Koby explains why a "normal" #MRI does not always mean a patient is free of #symptoms.

#Chiari #syringomyelia #EDS #radiology
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People
Have them in circles
96 people
Heather Harrison's profile photo
Jackie Gavin's profile photo
Kris Stewart's profile photo
Anthony R Gentile's profile photo
Kathy Kahlstorf's profile photo
Amanda Grube's profile photo
Amanda Rodgers's profile photo
Tyler Zipped's profile photo
Melissa Wilson's profile photo
Contact Information
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(718) 966-2593
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Story
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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.