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Chiari & Syringomyelia Foundation (CSF)

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Nonprofit Overview

Causes: Health, Neurology & Neuroscience

Mission: The Chiari & Syringomyelia Foundation, Inc. (CSF) was established in October 2007 by a group of passionate and dedicated people who are committed to aggressively pursuing a cure for Chiari malformations (CM) and syringomyelia (SM). Our Medical Research Board consists of leaders in neurosurgery, neurology, neuroradiology, genetics, veterinary medicine, and engineering. Our Vision: Within a generation, we will be the preeminent world-wide resource for professional and laypeople seeking accurate and current information about treatments for and best practices surrounding the management of CM and SM. With our unique resources, both financial and intellectual, we will be the leader in driving ongoing programs and research focused on earlier diagnosis and better outcomes for people suffering with these disorders.

Results: Here are just a few of the items we have accomplished and helped to fund since our inception in 2007: - research projects involving CM, SM and related disorders - educational lectures given by medical professionals - several fundraising efforts including (not limited to): the annual Bobby Jones Golf Classic in Atlanta, GA, about 50 annual national unite@night walks, as well as fundraising dinners, dances, etc... - annual Think Tank of thought leaders across nation - recurring International Hydrodynamics Symposium - a new campaign to educate medical professionals about CM, SM and related disorders: "Consider Chiari" - funding for a golf cart to help children with full or partial paralysis stay physically active (alongside Georgia Tech) - multiple annual research colloquia And we have so many more ideas! If you would like to help, you can either donate directly or actively volunteer at events like those listed above by starting a CSF Chapter!

Target demographics: educate about and fund research on Chiari malformation, syringomyelia and related disorders.

Geographic areas served: United States

Programs: Do you want to volunteer? You can get started locally by setting up a CSF Chapter in your area! You will help to organize a unite@night walk, fundraise, organize educational lectures and programs, hold meetings and become an integral part of CSF's national/international team! Email Cathy Poznik at cpoznik@csfinfo.org to get started!

Community Stories

54 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 5

As a member of the board of this fine organization, I feel compelled to compliment our executive director and her staff. Nowhere have I met a more dedicated team of people. They work tirelessly, going above and beyond the call of duty, to make sure that the charity is successful, reputable and respectable. Each and every one of them views their position as a "calling" rather than simply a job. Chiari and Syringomyelia sufferers, including my 15-year old son, owe much to these dedicated women.

Nicole76

Client Served

Rating: 5

My son Reid, age 6, was diagnosed with a Chiari Malformation a little over a year ago. It was a very confusing & difficult time & finding the proper information about this disorder is difficult. We had trouble finding doctors with experience treating children with Chiari & giving us correct advise. CSF was a great source of information & help in leading us to the right doctor for our son. So much more research & education needs to be done & they are committed to both. Thankful & blessed to have them.

Volunteer

Rating: 5

I have a Chiari-malformation. It is not well known so to find a Dr. that has even heard of it is rare. It is congenital. I have 3 children and they have a high risk of having it also. It effects the quality of life everyday more and more. I want better for my children. This foundation is helping so much to help awareness and improve life of a chiarian.

Samantha35

General Member of the Public

Rating: 5

I have a set of rare brain and spinal diseases called Chiari malformation and Syringomyelia. I have to struggle to find doctors who even know what these rare neurological disorders are. This charity raises funding for research needed to find a cure for people like me.

Donor

Rating: 5

I have been a long time friend of a family with Chiari. I understand enough about the disease to know what struggles go along Chiari and Syringomyelia Malformation. It's been wonderful attending the benefits held in Twinsburg for this wonderful cause. So many people are helping to make awareness happen. There are so many people that don't know what Chiari is. The Chapter her in Twinsburg is run by Cathy Poznik, who has 2 sons diagnosed with Chiari and Syringomyelia Malformation. She is a very motivated person that has helped spread awareness through her efforts in walks, benefits, etc. I'm glad I've been a part of this cause. More people need to help bring a cure to this debilitating disease.

John192

Advisor

Rating: 5

As a supporter and advisor to CSF, I am delighted to share my impressions and recommendations. The organization is directed by a highly committed group of compassionate professionals. The directors have for years fought for recognition of the disorders of Chiari & syringomyelia, conditions that diminish the quality of life, sometimes severely. Many sufferers are undiagnosed and frequently discounted by the healthcare system and loose faith. Returning this faith and pushing for better treatment and hopefully a cure is the organizations mission. Simply, it is my honor to be associated with such a team. Their work can be seen in the smiles and the comforting exhalation of breath often seen when they know they are surrounded by those that understand and can help and guide.

General Member of the Public

Rating: 5

I learned of Chiari Malformation, syringomyelia when a friend of my son's was diagnosed in grade school. Since then, this young boy who has now grown into a young man has had to endure countless life threatening surgeries and still goes through daily pain that goes along with these conditions making it very difficult to lead a normal life. I had never heard of Chiari Malformation, syringomylelia before this, and yet not only was a brother of this young boy also diagnosed with the same condition, but I now know of several others in and around our community and across our nation that also suffer and live from one day to the next not knowing what they will be able to do each day.

The Cleveland Chapter of the Chiari & Syringomyelia Foundation, Inc. (CSF) has done a great job in bringing awareness to this disorder and working to advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders. The work of CSF is supported by tax-deductible contributions made by individuals, companies, and organizations.

I am pleased to help out in anyway I can to help benefit the over one million families who struggle daily with the devastating effects of Chiari malformation, syringomyelia and related disorders. I am just one person though and can only do so much. They need more support.

Sincerely,

Darilyn Simon

General Member of the Public

Rating: 5

I don't know what I would have done without being able to pick up the phone and call the wonderful ladies of CSF. From the time my daughter Cara was diagnosed at age 9 through her surgery at age 10, I was able to call with questions, concerns, direction and emotional support. I could never thank them enough for their loving help.

Amy I.

Volunteer

Rating: 5

CSF has been a fantastic organization for myself to learn more about my daughter's diagnosis of Chiari Malformation. They often hold seminars with experts in the fields of neurosurgery, neurology, genetics, physical therapy, radiology, and many more fields that related to Chiari and Syringomyelia. They record those lectures, then place them online for anyone in the world to see and learn. They have been tremendously helpful. They have also guided me in setting up a local co-op for other families in our area to connect with each other. We also helped lead a CSF unite@ night walk for our local community to raise funds for research. I recommend for everyone that I'm explaining Chiari to to check out CSF website to learn more!

Amy_89

Client Served

Rating: 5

CSF has been incredibly helpful to myself and my family as we faced my daughter's diagnosis of Chiari and Syringomyelia in early 2012. They have wonderful resources with all the information you could possibly ask for regarding both and much more! My daughter and I have both attended several of the free seminars which have been incredibly insightful and it helps my daughter to know she is far from alone! This was our first year participating by starting our own Charter in Clyde, Ohio and having our CSF Unite@night walk and it was overwhelming the community support and to find so many other people in our surrounding area effected with this. CSF and the volunteers go above and beyond to spread awareness, help out in any way possible. It is an amazing relief to already worried parents to have CSF , all their information, compassion and caring people who will do whatever they can to share any and all info they have. Thank God for CSF and all it's many volunteers!

Review from Guidestar