I recommend CSF for information. I believe in them so much, that I have become a volunteer to host an annual walk. They strive to bring awareness and research to al communities.
In 2009 my son was diagnosed with Chiari. CSF was one of my go to sites to get information. We host a walk every year for them. I highly recommend working with this group. They are quick to respond to questions.
After my daughters diagnosis in 2012 of Chiari, Syringomyelia and a pituitary tumor I was desperate to lear more so I could help her find the best care possible. After talking with them we decide to host a CSF Unite at Night Walk...working with Cathy Poznick was great and her passion to find a cure is evident in all she and the others do that make up the team of professionals at CSF. I have referred many newly diagnosed individuals to their site and they were well informed and grateful!
CSF has been a great resource for me as. a patient and is a pleasure to work with as an organization.
When my daughter was diagnosed with Chiari and syringomyelia 4 years ago I was totally overwhelmed and was desperate to find information to help me to better understand the condition. I very fortunately stumbled upon the CSF website which has proven to be an incredible resource. The physician education videos are a wealth of information. They do a great job of staying relevant and current and are continually providing new information. As a parent trying to make difficult decisions for my child's treatment I feel that the resources available have allowed me to better understand the condition and therefore ask better questions when meeting with her medical team. By generating research for further advancement and tirelessly working towards educating the medical community on this condition they are doing a fantastic job of helping patients and their families navigate this challenging diagnosis.
I’ve learned so much about Chiari through CSF. The Education they put out is up to date and accurate. I’ve been to one of their lectures with a Neurosurgeon and was fascinated from start to finish
CSF has been around for a while now and are helping other group learn to lead as well.
True dedication for the Chiari community.
CSF gave us the tools and resources to find the best medical team for our family. They continue to perform much needed research and hold many lectures throughout the country each month. We would have been lost without CSF.
A fantastic organization with caring staff who go above and beyond in support of those with Chiari & Syringomyelia.
Working with the CSF team day in and day out and volunteering for the group from its inception, it is clear that this group truly cares and is so passionately invested in their mission. This makes for an incredible working environment, personally.
I was initially dx'd with Chiari 1, and decompressed as such. However, I actually had an Acquired Chiari 1.5, secondary to Intracranial Hypertension. Because I was decompressed and the pressure was allowed to remain from above, I developed a dural leak (pseudomeningocele) and a significant brain slump. Two years later, the unaddressed psuedomeningocele escalated, and I had a Subgalealperitoneal (SP) shunt put in to deescalate it. After years of revisions, an even larger brain slump, the development of an 11mm syrinx in my medulla oblongata (syringobulbia) draining down my cervical spine (syringomyelia), I will eventually be needing my shunt replaced with a Ventriculoatrial (VA) shunt and all the revisions that will come with that, especially as an Ehlers-Danlos patient. I also have a tethered cord that has yet to be addressed, but I'm surviving and still trying my best to thrive.
What I LOVE about the Chiari & Syringomyelia Foundation (CSF) is all the amazing videos that they put out. They support research, but they keep awareness as a key factor. There really is so much known about Chiari and its comorbid conditions, the doctors now need to know. The videos that they release year round, enable us to share what the doctors know, and help us make others aware of all we "really" go through. They trust us to support their efforts through walks, which serve an additional purpose of getting us out of the house and actually having face-to-face encounters with other Chiarians. I will forever be grateful to CSF (and Cathy) for all the hard work they put into building a sense of community, in our community. I encourage everyone reading this, whether they have Chiari or love someone who does, get to a Unite@Night walk in your area. If there are none, start one. You'll never regret it, nor will those that join you, as they have that opportunity of community and hope offered through Unite@Night walks!
I have organized a unite@night walk for the past 4 years. I've attended the past two unite@thehill events. I have attended countless educational events and I am so very happy to be associated with them. CSF made a difference in my life!!!
CSF has made a HUGE difference in my life!! I had been diagnosed with Chiari just 2 months prior to the very first educational event in Washington DC. When I learned of the event I registered to attend. That night I met people who remain a part of my life, including the neurosurgeon who performed my decompression surgery. The group and the people who attend CSF events, are my lifelines during hard times. The research is above and beyond and I'm thankful for the advancements I've seen. Thank you CSF for ALL you do!!!!
My daughter has chiari. When we first found out this is one of the foundations that I was told to look into. I’m so glad I did.
The CSF organization has been a saving grace for me. As a person with chiari, they have provided support in the areas of education by sponsoring lectures, meet n greet medical professionals, informative info on social media, a supportive community, sponsored local events & even helped with finding the right specialists & doctors. The CSF staff is friendly & have a big heart for helping those struggling for answers. Thank you.
I was a young mother of 3 boys far away from family. My husband and I were walking to our sons first football game when I went down, my legs had NOTHING and stayed that way for 3 days. Went through decompression, twice. I was so alone as nobody had ever heard of it.
I found csf, they have made such a difference. Working together to bring awareness to this monster. Thank you for taking the time to read my story.
Having a child with what seems like a very rare malformation is terrifying! Being misdiagnosed for over a decade because doctors, family and the general population have no idea what to look for, or how to test for it, or even what the symptoms are....is infuriating. But how will people know? How will doctors learn and our knowledge and understanding grow if not for organisations like this one getting the word out! The Chiari and Syringomyelia Foundation have featured so many of the 'experts' in this field, and there aren't many. What they are doing for this disease is fantastic, This information needs to be out there, and it needs to be available to the general public. Patients and mothers and caregivers need to be armed with useful and reliable medical knowledge so that they can help doctors diagnose and treat a disorder that is much, much more common than we understand. This is a problem that can be solved, maybe not prevented? But either way, this knowledge is power and it's so very important to me and hundreds of thousands of others.
As a patient who has Chiari I have been ignored, lied to, and ignored by this organization. The organization doesn't see any issue with spreading incorrect info regarding Chiari.
I was born with a tethered spinal cord and developed syringomyelia from it not being properly diagnosed. Two of my children have Chiari Malformation and we all have hypermobile Ehlers Danlos Syndrome. It took four and a half years for me to get the right diagnosis. After which I felt empowered to finally start treating my illnesses. That was quickly followed by hopelessness and despair as all of my doctors told me they knew nothing about any of it. The CSF has an amazing board of advisors, physicians recognized around the world, listed on their site. I first contacted Dr. Fraser Henderson, who reassured me, I was not an anomaly to him. He has since done three surgeries on my neck. Dr. Petra Klinge, also on the board, has performed Spinal cord surgery on me and is going to now start seeing my children. Without the CSF, the information and resources they provide, I don't know where I'd be. Those doctors saved my life. As I learned more about my illnesses, my desire to raise awareness has become a calling. Now, with the help of the CSF, I hope to bring awareness and education to the doctors in the Hampton Roads area of Virginia. This is only the second year our area has held a unite@night walk, and those of us chairing the walk feel the CSF provides such a tremendous service to people with Chiari and Syringomyelia, that we want to give back to the organization year after year so they can continue to serve their mission.
Four years ago, when my grandson was diagnosed with Chiari Malformation, my first call was to Dorothy Poppe. I cried and told her about my grandson's diagnosis. Dorothy was extremely compassionate and helpful on that day and in the months that followed. She has always answered every question and continues to do so to this day. Her first hand knowledge of chiari both as a mother and a professional has been an important resource to me and my family. We continue to support CSF and all it's programs.