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Chiari & Syringomyelia Foundation
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Break out your purple, your blue, your zebra print, or your own #awareness  colors… because it's officially Awareness Month! 

All month, we'll be posting facts, information, testimonials, resources and anything else we can think of to help spread awareness of #Chiari , #syringomyelia , #EDS  ( #ehlersdanlos ), #dysautonomia , #POTS , #IIH , #hydrocephalus , and all other related disorders! Send us pics and stories of your own awareness efforts so we can repost it and boost this important message!
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Dr. Holly Gilmer at +Beaumont Health System gives a lecture on the diagnosis and treatment of patients with #tetheredcord syndrome.
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ADVOCACY ALERT! This is not a drill! The entire #Chiari , #syringomyelia  & related disorder community is relying on you!
The U.S. House Of Representatives is getting ready to vote on a piece of legislation called The 21st Century Cures Act (HR 6) NEXT WEEK. The CM, SM and related disorder community needs EVERYONE to contact their Congressional representatives and ask them to support this legislation now! It will improve and modernize #research , personalize medicine, and help develop new treatments, with special consideration for #neurological   disorders! Let's get this legislation passed! Learn how to help RIGHT NOW: http://csfinfo.org/advocacy/become-advocate/

#advocacy   #21stcenturycures   #biomedical   #innovation
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There are only TWO DAYS LEFT to vote! Vote today for NE Ohio Consider Chiari to help fund research, education and awareness programs for medical professionals and the public, alike! Vote NOW: http://ow.ly/NLMxb

Let's make sure there is a HUGE showing from the #Chiari , #syringomyelia  and related disorder populations!
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On Monday, CSF, +Georgia Tech and E-Z-GO unveiled the first ever adaptable device that will allow children with differing levels of #paralysis  to play the game of #golf .


The device gives these children the opportunity to not only master a sport, but allows them to live an active, healthy lifestyle to improve their overall quality of life. Learn more: http://ow.ly/Ncq2o
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Watch Dr. Oliver Lawless give an interesting talk on #lupus and #neurodegenerative disease at the April CSF Chapter meeting in the greater Washington, DC area!

Visit our website for more #lectures of #Chiari, #syringomyelia and related disorders: http://csfinfo.org
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Have them in circles
107 people
Frances Contreras's profile photo
Accessible Mobility's profile photo
Amber Domerese's profile photo
Bronwyn Wood's profile photo
Anthony R Gentile's profile photo
Richelle Crall's profile photo
Chiari Malformation's profile photo
Cathy Poznik's profile photo
Cheri Garriott's profile photo
 
We are just $2,000 away from reaching $115,000 raised for #uniteatnight ! The outpouring of support we have received from the #Chiari , #syringomyelia  and related disorder community is always amazing!

Thank you for everything you have already done to support the patients and families who struggle with these disorders!

Help us do more by getting us past $115k! Register to host a Solo Walk, and help us fund more #research !
SOLO WALKS. unite@night supports local CSF Chapters, as well as large-scale research and education projects to benefit the over one million families in the United States alone, who suffer everyday from Chiari malformation, syringomyelia and related disorders. unite@night is a one-mile, ...
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We are so happy to announce that YOU have helped ensure that #Chiari , #syringomyelia  and related disorder #education  and #research  meetings will continue with a $25,000 grant from State Farm Neighborhood Assist®!

We at CSF are so humbled and honored to serve such an interconnected, thoughtful and caring community. The support you show for each other, is the same support we strive to show every single day for all of you. http://www.state-assist.com/
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We love when our volunteers go the extra mile for the family and friends that they love! Check out Angelina and Zachary making a call to action for their friend, Lydia, who has #Chiari malformation!

You can join Lydia, Angelina and Zachary at their 2015 unite@night walk in Shorewood, IL by registering or donating to the cause at: http://unitenight.kintera.org/shorewood
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HELP CSF WIN A $25,000 GRANT FROM STATE FARM TODAY!

Thanks to one of our most dedicated "‪Chiari moms", CSF is one of a final 200 charities chosen out of 4,000 applicants to receive $25k… but now we need your help! Share this link and vote! You can vote up to 10 times each day for the next 3 weeks-- CSF is falling behind, so help us signal boost this cause and ensure that CSF can host more #ConsiderChiari  lectures and educate medical professionals and the public, alike about #Chiari , #syringomyelia  and related disorders!

Vote NOW: https://apps.facebook.com/sf_neighbor_assist/desktop/3/causes/1505079?hc_location=ufi
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Are you a college student or a recent grad, looking to become a leader in your local community in the fight against #Chiari  malformation, #syringomyelia , and related disorders? Become a CSF Young Adult Ambassador!

We're going to #YAAS  our way to change!

Request more information: info@csfinfo.org #CSFinfo
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People
Have them in circles
107 people
Frances Contreras's profile photo
Accessible Mobility's profile photo
Amber Domerese's profile photo
Bronwyn Wood's profile photo
Anthony R Gentile's profile photo
Richelle Crall's profile photo
Chiari Malformation's profile photo
Cathy Poznik's profile photo
Cheri Garriott'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.