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October 27, 2013

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October 27, 2013

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!!!

Ways to make it better...

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.

More feedback...

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

October 9, 2013

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October 9, 2013

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.

More feedback...

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

October 9, 2013

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October 9, 2013

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.

Ways to make it better...

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

help to increase awareness about CSF around the world.

More feedback...

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

October 7, 2013

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October 7, 2013

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.

Ways to make it better...

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

I have nothing to complain about

More feedback...

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

October 7, 2013

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October 7, 2013

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.
October 6, 2013

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October 6, 2013

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.

More feedback...

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

October 6, 2013

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October 6, 2013

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.

Ways to make it better...

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.

More feedback...

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

October 6, 2013

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October 6, 2013

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.

Ways to make it better...

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

More public knowledge

More feedback...

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

October 6, 2013

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October 6, 2013

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.

More feedback...

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

October 6, 2013

more

October 6, 2013

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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