Chiari & Syringomyelia Foundation

About This Organization

CSF: Who Are We?

CSF (Chiari & Syringomyelia Foundation, Inc.) is a 501(c)(3) non-profit organization that was founded in October 2007 with the goal of raising awareness and finding a cure for Chiari malformation (CM), syringomyelia (SM) and related disorders. 

CSF Network of Experts

The CSF Scientific Education & Advisory Board is comprised of several internationally renowned medical doctors, professors, scientists and experts. Further, the CSF Board of Directors and Board of Trustees include community and business leaders, educators, legal experts, families and patients, who have long been advocates in the CM/SM community. Their skills and drive to develop, fund, and oversee CSF programs and research will improve the lives of the over one million families affected by Chiari malformation, syringomyelia and associated disorders in the US, alone. 

CSF: Recognition & Awards

CSF is currently the only organization serving patients with Chiari, syringomyelia and related disorders to have earned all three of the following distinctions: BBB Wise Giving Alliance Seal, Guidestar Gold Seal and the Health On the Net Code. Check us out in the November 2016 issue of USA Today among the other nonprofits deemed as both effective in their missions, and responsible with their donors' dollars

Campaigns

2/9/2017 - Charleston, SC Educational Lecture
2/9/2017 - Charleston, SC Educational Lecture
RSVP
This educational lecture is provided free-of-charge as part of the CSF Educational Lecture Series and is open to all patients, families a...
$0 raised
1/11/2017 - Washington DC Educational Lecture
1/11/2017 - Washington DC Educational Lecture
RSVP
This educational lecture is provided free-of-charge as part of the CSF Educational Lecture Series and is open to all patients, families a...
$0 raised
2017 Speakeasy
2017 Speakeasy
Campaign
Saturday, March 11, 2017Hilton Garden Inn - Staten Island1100 South Ave, Staten Island, NYCocktails: 6:00 PM - 7:00 PMDinner/Gaming:&nbsp...
Morristown, New Jersey Educational Lecture 11/15/16
Morristown, New Jersey Educational Lecture 11/15/16
RSVP
This educational lecture is provided free-of-charge as part of the CSF Educational Lecture Series and is open to all patients, families a...
$0 raised
Charleston, South Carolina Educational Lecture - 11/7/2016
Charleston, South Carolina Educational Lecture - 11/7/2016
RSVP
This educational lecture is provided free-of-charge as part of the CSF Educational Lecture Series and is open to all patients, families a...
$0 raised
2016 Alamogordo, NM unite@night walk
2016 Alamogordo, NM unite@night walk
Team Campaign
Attention Walkers: Please register as a team or as an individual. If you are creating a team, please click the register team button. I...
$900 raised (60%)
12
2017 Bobby Jones Classic for CSF
2017 Bobby Jones Classic for CSF
Campaign
May 21-22, 2017East Lake Golf Club - Atlanta, Georgiabobbyjonesclassic.comIn partnership with the Jones family, we are hosting the Bobby ...
Houston, Texas Educational Lecture - 9/30/2016
Houston, Texas Educational Lecture - 9/30/2016
RSVP
This educational lecture is provided free-of-charge as part of the CSF Educational Lecture Series and is open to all patients, families a...
$0 raised
2016 Spartan World Championships: Ava's Challenge
2016 Spartan World Championships: Ava's Challenge
Campaign
This... is... Spartan Ava!She may only be 7 years old, but Ava Wright has been a Chiari Champion for a while now.  She works really ...
$10 raised (1%)
1
2016 Houston, TX unite@night walk
2016 Houston, TX unite@night walk
Team Campaign
Attention Walkers: Please register as a team or as an individual. If you are creating a team, please click the register team button. In a...
$705 raised (28%)
10/12/2016 - Washington DC Educational Lecture
10/12/2016 - Washington DC Educational Lecture
RSVP
This educational lecture is provided free-of-charge as part of the CSF Educational Lecture Series and is open to all patients, families a...
$0 raised
Orlando, Florida Educational Lecture - 10/3/2016
Orlando, Florida Educational Lecture - 10/3/2016
RSVP
This educational lecture is provided free-of-charge as part of the CSF Educational Lecture Series and is open to all patients, families a...
$0 raised
2016 Night of Light Children's Gala
2016 Night of Light Children's Gala
Campaign
This event will be held for a limited number of philanthropic guests. Attendees will include leaders from around the world in the treatme...
$254,384 raised (84%)
2016 Dinner Dance For A Cure
2016 Dinner Dance For A Cure
Campaign
The 6th Annual Dinner Dance For A Cure will help raise funds for research and programs that educate the medical and lay community about C...
2016 Shine a Light on CSF - Dinner, Dance & Auction
2016 Shine a Light on CSF - Dinner, Dance & Auction
Campaign
The 2016 Shine a Light on CSF Dinner, Dance and Auction will help raise funds for research and programs that educate the medical and...
Weill Cornell Educational Lecture 10/13/16
Weill Cornell Educational Lecture 10/13/16
RSVP
This educational lecture is provided free-of-charge as part of the CSF Educational Lecture Series and is open to all patients, families a...
$0 raised
2016 Crush Chiari / Smash Syringomyelia / Squash EDS
2016 Crush Chiari / Smash Syringomyelia / Squash EDS
Group Campaign
Help us Crush, Smash and Squash... with a little change!Want to help raise important funds for programs and research that benefit peopl...
$1,072 raised (21%)
  1. Kelly Hurrell gave a $5 donation
    8 months ago · Like
  2. An anonymous donation of $30 has been made
    10 months ago · Like
  3. Jay Mullins
    Jay Mullins gave a $6000 donation to 2017 Bobby Jones Classic for CSF
    $6000 to 2017 Bobby Jones Classic for CSF
    May 21-22, 2017East Lake Golf Club - Atlanta, Georgiabobbyjonesclassic.comIn partnership with the Jones family, ...
    10 months ago · Like
  4. Kelly Hurrell gave a $5 donation
    10 months ago · Like
  5. An anonymous donation of $20 has been made
    10 months ago · Like
  6. An anonymous donation of $30 has been made
    11 months ago · Like
  7. Ingrid Pokrass gave a $50 donation
    11 months ago · Like
  8. jennifer del boccio
    jennifer del boccio gave a $200 donation
    Dedication In Honor of: Shane Cordes & the Cordes Family
    11 months ago · Like
  9. Kelven Book gave a $100 donation
    11 months ago · Like
  10. Jackson County ISD  - Friends
    Jackson County ISD - Friends gave a $100 donation
    Dedication In Memory of: Mary Ellen Smith
    11 months ago · Like
  11. Jennifer Danny Betzalel and Noam Cohen
    Jennifer Danny Betzalel and Noam Cohen gave a $50 donation
    Dedication In Honor of: Tyler Barber
    Would it be possible to send a certificate to Tyler Barber of our donation in honor of his Bar Mitzvah? I think this would mean a lot to him and his family. His address is: Tyler Barber 11210 NW 39th Street Coral Springs, FL 33065. Please let me know either way. Thank you so much!!! Best, Jennifer
    11 months ago · Like
  12. Benjamin Roei Gurvitz
    Benjamin Roei Gurvitz gave a $700 donation to 2017 Speakeasy
    $700 to 2017 Speakeasy
    Saturday, March 11, 2017Hilt...
    11 months ago · Like
  13. An anonymous donation of $20 has been made
    11 months ago · Like
  14. Tracy  Sesselberg
    Tracy Sesselberg gave a $35 donation
    Dedication In Honor of: Caden Sumner
    11 months ago · Like
  15. LuLaRoe Melissa Finkey
    LuLaRoe Melissa Finkey gave a $30 donation
    Dedication In Honor of: Elizabeth Brubaker
    Fundraiser through LuLaRoe raised this money for Ignite the Light for Lancaster PA with Elizabeth Brubaker's team.
    12 months ago · Like
  16. An anonymous donation of $30 has been made
    12 months ago · Like
  17. Nancy Villegas
    Nancy Villegas gave a $150 donation
    12 months ago · Like
  18. William and Cynthia Wilcock
    William and Cynthia Wilcock gave a $250 donation
    We cannot be the only couple making a donation so why isn't there room for a 2nd name, e-mail etc. (cjwilcock@gmail.com)
    12 months ago · Like
  19. Gail Hammill
    Gail Hammill gave a $200 donation
    12 months ago · Like
  20. Eli & Rachel Salzmann
    Eli & Rachel Salzmann gave a $500 donation
    12 months ago · Like
  21. Mary Parlett-Sweeney
    Mary Parlett-Sweeney gave a $50 donation
    12 months ago · Like
  22. kacie van winkle
    kacie van winkle gave a $100 donation
    Dedication In Honor of: Crystal Olson
    12 months ago · Like
  23. Amy Fults
    Amy Fults gave a $250 donation
    12 months ago · Like
  24. An anonymous donation of $20 has been made
    12 months ago · Like
  25. Marylee and Matt Davis
    Marylee and Matt Davis gave a $250 donation
    12 months ago · Like
  26. Kathleen Hackett
    Kathleen Hackett gave a $50 donation
    Dedication In Honor of: Aislinn Hackett
    12 months ago · Like
  27. David Hunt
    David Hunt gave a $300 donation
    Dedication In Honor of: The Markle Family
    12 months ago · Like
  28. joseph donzelli
    joseph donzelli gave a $100 donation
    12 months ago · Like
  29. An anonymous donation of $1000 has been made
    12 months ago · Like
  30. Rachel Crawford
    Rachel Crawford gave a $10 donation
    I am a person with Chiari Malformation, Syringomyelia, Hydrocephalus (2 shunts with entrapped 4th ventricle). I have undergone 16 brain surgeries, 15 since 2012 with last one 7 months ago. First one in 2007 at age 16 and am 25 years old. I am needing another surgery as I'm having unequalized pressure from the 2 shunts. I required the 4th ventricular shunt due to a enlarged ventricle and now my 3rd ventricle is enlarging. I need a endoscopic third ventriculostomy and a shunt revision due to my shunt hardware protruding from the side of my neck and my catheter as well. I have been in pain management since 2012 at age 19 and had spent over a year in the hospital fighting mostly from staphacoccus bacterial meningitis that was undiagnosed for almost a month from a duraplasty. I feel for everyone with this uncurable disorder. I'm in daily pain and have never been the same since 2012 and have developed multiple secondary Medical diagnosis including cardiac problems.
    12 months ago · Like
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