Chiari & Syringomyelia Foundation (CSF)

Rating: 5 stars   21 reviews

Issues: Health

Location: 29 Crest Loop Staten Island NY 10312 USA

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): an annual Bobby Jones Golf Tournament in Atlanta, GA, many national unite@night walks, as well as several 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: cities around the United States and Canada
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!

2013 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

I am only 14 but I was diagnosed with Chiari Malformation and Syringomyelia July 2013! I had no idea of both of these conditions or that they even existed! I then had surgery for chiari and syringomyelia on 14 October 2013. As an adolescent growing up with friends that were all perfectly healthy it can be tough. I thought I was alone in the world. I am very inquisitive so I tried to look at other people stories and their understanding of how to cope with this. When I came across the Chiari and Syringomyelia Foundation (CSF ) I was beyond delighted they do great work to help find a cure for this agonizing painful condition. I really wish there were more foundations like this for Chiari and Syringomyelia as no one will fully understand how it is living with this. Some days can be better than others but sometimes you can loose the mental stability to live! This foundation should be fully credited they raise money for a condition most people would turn a blind eye to as they can't see the suffering from the outside! I live in the Northern Ireland that's how far this foundation has made an impact and one day I hope to attend a walk with this foundation!

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Rating: 5 stars  

They are doing wonderful things! Raising awareness and laying community is what it's all about. Oh no, they don't just stop at research.

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Rating: 5 stars  

I was diagnosed with an incurable disorder at the age of 34. The word "Chiari" entered my world and changed my life. I went from an active, teacher mom of 2 young children to a parent who struggled to stand on her own two feet. I discovered the Chiari & Syringomyelia Foundation as I researched my condition. To my delight, I found information, advocates--and new friends. I wasn't battling alone, I had a team beside me. To say that CSF has changed my life, would be to state it lightly. I have gratefully been healing from brain surgery to help with my symptoms and this allowed me to host two *unite@night* walks in my home state. Those walks brought awareness, education and research dollars to CSF--more importantly, they allowed those suffering from Chiari and its related disorders to gather together. To share our laughter and tears is the most wonderful gift. I happily volunteer as a way to give back to an organization that has given me so much. Together, we can find a cure!!!

If I had to make changes to this organization, I would...

expand the knowledge of the group to a larger community....there are so many people who can be helped. We do not have to battle alone. There is strength is our numbers.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

I began working with CSF two years ago as a Steering Committee member of the Bobby Jones Classic for CSF at Bobby Jones' home course, East Lake Golf Club, just outside of Atlanta, Ga. We are now in our third year of the Bobby Jones Classic for CSF and I am more impressed each year with the foundations personal attention and determination to find a cure for Chiari and Syringomyelia.
I was recently asked to join the board and subsequently was nominated as the foundations Treasurer. Working with this group gives me hope and confidence that there is a cure for these disorders and we will soon be able to relieve the pain and suffering caused by Chiari and Syringomyelia.

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

As a Board member, I have had the privilege of working with the staff and other volunteers within CSF. The organization is so focused on finding a cure for chiari and syringomyelia that I believe it will become a reality! It is a blessing to be a part of such a wonderful community of people who strive each day to make difference in this endeavor.

If I had to make changes to this organization, I would...

help to increase awareness about CSF around the world.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

My Name is Joyellen Sanders. My husband and I were a coordinator for a walk this year. This organization was always there to help us and others like us. They were very informative and made everything easy. Friends and Family have told us how much they loved the walk and how much they loved the things that CSF had available for us at the walk. There were informative signs about our condition and related. Registration was easy. Even after the walk, CSF has continued to stay in touch to make it better for all.

If I had to make changes to this organization, I would...

I have nothing to complain about

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

My name is John Wojtila from Euclid Ohio. I've attended many functions over the past years sponsored by this Foundation and they have all been educational, informative and help bring awareness to these conditions. I have supported this group and will continue to do so as they work to sponsor research necessary for the future to combat these conditions. The Foundation is professionally managed and organized with a clear focus on its Mission. The goals of this Foundation are crucial, important and noble. Congratulations Chiari & Syringomyelia Foundation.

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Rating: 5 stars  

I have been associated with CSF, Inc. since its inception. The dedication and hard work of the administrative staff, Executive Director, and Board members are among the finest group of individuals I have had the privilege of working with throughout a long professional career.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

My name is Jade & I am from Melbourne, Australia.
& although this is an American organization, it really does help everybody.
I suffer from both Chiari malformation type 1 & syringomyalia.
I was diagnosed at age 3 & had my first surgery at age 4.

We need awareness, globally. I can't tell you how much it would mean to every chiarian, family member & or friend of a sufferer, to have this as global knowledge.

You have my support & support from many within 'my' Australian support group (on Facebook)
Our members often use the 'Chiari & Syringomyalia foundation's site to gain additional knowledge & to know we are not so alone.

Thank you.

If I had to make changes to this organization, I would...

Hope they would receive the funds to be able to make change on a global scale Naturally, being from Australia, I would like Aus to be the first country & then watch it to continue to spread throughout the globe.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

I have Arnold Chiari Malformation which is a rare brain disorder that is congenital. It is being diagnosed more and more as information such as provided by this organization is being better known by physicians and the public. I live in a small town and two people in my town and a small child in a nearby town have been diagnosed since I have 8 years ago.

If I had to make changes to this organization, I would...

More public knowledge

Will you volunteer or donate to this organization beyond what is required of advisors?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful?