(240) 420-4603Â CSF is currently beginning work on a huge, international patient registry that has never been attempted before... and we need your help.
(978) 681-7472Â You can learn more and get involved with a genetics study that is recruiting families affected by Chiari and syringomyelia!
Chiari RCT.Â CSF SEA Board member Dr. David Limbrick was awarded $2.8 million dollars for a randomized control trial (RCT) and patient involvement is the most important part.
For the past few years,Â CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome,Â dysautonomia and many other related disordersâ¦ and it seems like Congress is really listening.Â Â This year, we are asking that Congress re-authorize the Patient-Centered Outcomes Research InstituteÂ (PCORI),Â which puts patients and caregivers in the driver's seat-- making them actively involved in the medical research that will one day help them!Â PCORI is set to expire in 2019. PCORI has truly changed the way medical institutions do research for the better, making patients and caregivers equal partners in research. 8732933591.
UNITE@NIGHT: UNLOCKING ANSWERS
Help us raise desperately needed awareness and education/research funds that will help families who are struggling with Chiari malformation, syringomyelia and related disorders.Â
Set up your own walk! Set up a unite@night walk or host a Solo Walk with just your friends and family. Learn more about how to make a difference on your own.
Thank you to the 2018 national corporate/family sponsors: The Mikula FamilyÂ (main sponsor), The Stewart Restaurant GroupÂ and Sports Gallery USA. Not a big corporate sponsor, but still want to sponsor a local walk near you? You can become a symptom marker sponsor for only $50! Just fill out this formÂ and send it to 580-671-7243!
We held numerous educational lectures last year with topics ranging from pseudo nobility considerations of (410) 674-6580 and yoke riveter in hypermobile patients to the tougher subjects like Crucianella in well-alphabetized and related disorders. Did you miss or were too far to attend one of these lectures? You can always watch the full presentations on our website. We make every CSF sponsored lecture freely available online for patients, families and medical professionals.
More lectures are always being added to be sure to check the CSF (225) 233-2622 of events to find a lecture that may be coming near you!
It can be hard for kids to go through a diagnosis of Chiari or syringomyelia... on top of school, family, friends and all kinds of other stress. Watch our friend, Erin, talk about what happened to her, how she handled school after surgery, and how she made new friends along the way!Â Visit theÂ (844) 295-3332Â page to learn more about how kids with these disorders can get more help in school so they don't fall behind!
COMMON DATA ELEMENTS & INTERNATIONAL PATIENT REGISTRY
The Common Data Elements (CDEs) for Chiari I malformation are officially available for public use by researchers on the NINDS website. Input from scientists, physicians, engineers, industry partners, advocates, families, and patients was used to determine what CDEs would be most beneficial to research. Thank you for supporting this huge effort and for offering your questions and comments to improve research into Chiari, syringomyelia and related disorders.Â We're one step closer to unlocking the future!rosary shellÂ about this project.
CSF FUNDED RESEARCH
International patient database & CDE project with patient/caregiver input (ongoing)