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2019 Top-Rated Nonprofit

C&S Patient Education Foundation

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Nonprofit Overview

Causes: Brain Disorders Research, Education, Health, Philanthropy, Philanthropy, Charity & Voluntarism Promotion

Mission: The C&S Patient Education Foundation is dedicated to improving the experiences and outcomes of Chiari & syringomyelia patients by: 1. Providing accurate, up-to-date, and easy to understand information to patients so that they can take control of their health care and make intelligent, informed decisions 2. Raising awareness among family, friends, and the general public so that they can understand what patients are going through and are better able to provide support 3. Raising awareness among, and providing accurate, up-to-date information to, the medical community, so that errors in diagnosis and treatment are reduced 4. Sponsoring research to advance the understanding of these conditions and in the end Conquer Chiari

Programs: Grants for research projects focused on improving diagnostics, assessing the cognitive effects of chiari, genetics research, and other critical areas. Most funding is directed towards the conquer chiari research center (ccrc) at the university of akron, the world's first research laboratory dedicated solely to advancing the medical and scientific understanding of chiari malformation. The ccrc is a state of the art facility, staffed with distinguished researchers, working diligently to: apply the latest engineering techniques and analysis to improve diagnoses and treatment options, leverage the conquer chiari patient registry to study the epidemiology and natural history of chiari, foster collaborations with leading clinicians and scientists to advance the conquer chiari research agenda and act as a focal point for the chiari research.

Community Stories

26 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

I was first diagnosed with chiari about 15 years ago. I have had a total of 8 brain surgeries plus a spinal detethering related to this condition. My daughter, son and several grandbabies also have chiari and related conditions. We found our first walk 5 years ago and it was over 2 hours away. We took over the next year and love watching people realize that there are others like them. This nonprofit offers a great way for us to reach out to others throughout the country, as well as fund research and education to help continue finding more answers.

Volunteer

Rating: 5

I was diagnosed with Chiari in 2010 I was lost and didn't have a clue what it was. I did some research and had surgery I had surgery 05/11. I attended my 1st walk 2016 in Cordele Ga again 2017, but I hosted my own in 2018 in Ashburn Ga and will be doing it again this year. I think it's a great way to get awareness out and to raise money for research for a cure! Thanks for everything!

1 Kaylee D.1

Volunteer

Rating: 5

This foundation has been the voice for thousands of others out there battling this terrible disease. They are organized, responsive, hard workers and have a passion for what they do. And We love donating and doing fundraisers and walks for them because we know exactly where our money is going. Thank you C&S for giving us hope. We are so thankful!

1 Don B.4

Volunteer

Rating: 5

I was officially diagnosed with Chiari at the end of 2016. At first, I didn't know much about Chiari. Luckily, I have a friend that had me go to Conquer Chiari's website, where I learned a lot about my diagnosis. I then went to a local Conquer Chiari walk in 2017 and realized that I was definitely not alone. I attended their open house in Akron, Ohio and was pleased with everything that I saw. It made me very happy to see that they are working hard to one day put a stop to Chiari Malformation and to get answers on why it happens. Thank you so much Conquer Chiari!

1 Frankie R.

Volunteer

Rating: 5

I was diagnosed with Chiari Malformation in 2012. I did not know what it was and did research. They Conquer Chiari has helped me a lot to understand what I have got. I host a walk every year in Knoxville, TN. I have people ask me a lot of times what this is. I love to tell people my story, cause it show you there is a God and always keep your faith and strength.

1 Rebekah B.1

Volunteer

Rating: 5

My mom, brother and myself were diagnosed with Chiari a bit over 10 years ago. It wasn’t until 5 years ago that we heard of Conquer Chiari. We heard of a Chiari walk about 50m away from us and decided to shove our anxiety away and go. It was the FIRST time we’ve ever felt understood and ever fit in anywhere! They do amazing awareness and have great community involvement. We now volunteer at our own walk and almost every single person that shows up is so grateful to have an organization that sheds light on what we go through. It’s really amazing.

1

General Member of the Public

Rating: 5

This will be our 2nd year having a team and fundraising. I have three family members with Chiari. It feels good to donate and help raise awareness!

1

Volunteer

Rating: 5

This will be our 5th year! Before we started our walk I had never met anyone with Chiari, I can not even explain the feelings that came over me!

1

Volunteer

Rating: 5

Conquer Chiari has helped me to cope with my disorder and allowed me to become involved with awareness and advocacy relating to Chiair Malformation. It has provided me the platform to learn about current research and even participate in it. It is an extremely organized group full of wonderful people. It has been a pleasure to attend the Conquer Chiari Walk Across America 5Ks near me for the past six years, and I look forward to continuing to be involved in this group.

2

Client Served

Rating: 5

When my grandson was diagnosed with Chiari we had no idea what to expect. It took time but we finally found Conquer Chiari's website and it was such a huge help! We were so happy to finally have answers and find an organization that was doing much needed research on Chiari Malformation. Thank you so much for everything you are doing! We greatly appreciate it!

1

Volunteer

Rating: 5

Conquer Chiari is an incredible non-profit organization! They have been SO helpful since my diagnosis. They were there when I felt so alone with no answers. Now I'm the organaizer for the CCWAA Centralia for the second year!

1

Volunteer

Rating: 5

When my son was diagnosed with Chiari at 11 months old I had no where to turn. Finally a few months later I heard about Conquer Chiari and they were a HUGE help. I finally had information and met people through the Conquer Chiari Walk Across America. I am so thankful for this amazing organization. I have been volunteering with them since 2012 and I always well be! Thank you Conquer Chiari!

1

Volunteer

Rating: 5

My daughter was diagnosed with Chiari at age 4. Conquer Chiari was a godsend! It was the best source of information and support at a time when both were needed and hard to find. I am honored to volunteer for their annual fundraiser in order to help other families who are in the situation I was in. Conquer Chiari was, and is, a tremendous resource and I am very grateful for them.

2 Nicky B.1

Volunteer

Rating: 5

I was diagnosed with Chiari Malformation in August 19th, 2015. 45 Days before my wedding. We felt like we were afloat in the middle of the Ocean and there was nobody there to help. I was on the internet looking nonstop for any information that made sense and came from anywhere reputable and didn't seem like it wasn't just nonsense. Then I found ConquerChiari.com and from there I found the online support groups of people that were also part of the Conquer Chiari community. All of a sudden I felt like someone had thrown me a life raft and we were finally getting some direction, and we weren't so alone! Having people to talk to that knew what the heck we were talking about made all the difference in the world. Just having someone to talk to that understood what I meant when I said I felt foggy, made all the difference in the world. This is truly a wonderful organization, and after finding them, I HAD to get involved. Especially finding out that there were SO many people in my area that have Chiari, but so few people that actually knew anything about it. This will be my third year planning the walk here in my area through Conquer Chiari, and I wouldn't have it any other way. Because of them, I've been able to spread so much awareness, and I am so extremely proud to say I am associated with them. They are always available to answer questions, and help with anything they can. I love that they are very transparent with their financials and everything is posted right on their website. You can't find a better organization to be a part of.

2 Johnnie T.

Client Served

Rating: 5

I was diagnosed with Chiari Malformation when I was 18. No one I knew anything about the condition. Conquer Chiari helped us to understand the condition so much more than even my doctor's did. Now I am the organizer for the CCWAA walk in Centralia, IL!

2

Volunteer

Rating: 5

I live in small town where the doctors aren’t educated in Chiari Malformation. The members of the community suffered in silence feeling alone. Thanks to Conquer Chiari I’ve been hosting chiari walks and spreading awareness in my small area. The amount of people who have come to me and said I haven’t met anyone who has this and understands. If it weren’t for Conquer Chiari these people would still feel alone in this journey.

2 Diana Leeber C.

Client Served

Rating: 5

This organization has created an amazing community for the Chiari world. It does very important research that helps young and old. Amazing people with big hearts!!

1

Volunteer

Rating: 1

I was diagnosed in 2003. What I knew about Chiari was basically what the doctors were telling me. I felt very alone, overwhelmed and scared. Cut to 7 years later when I found this organization and attended a fundraising walk. This organization has connected me with others who suffer from this chronic illness and many resources to improve my well being. The fellowship I have found has been immeasurable. And forever thankful!

3 Sugababy

Client Served

Rating: 5

I can’t thank this organization enough they have got me through the roughest toughest times of my life I’m sure I’ve been on there nerves. But I can say this they have never turned me down or away always accepted me with open arms.

2 Jessie Nathan K.

General Member of the Public

Rating: 5

I live in a very small town yet four of us have the same rare disease and there are no doctors in the area who can help. I found the conquer Chiari organization online and it answered so many of our questions. After joining several of the groups led by the organization I was able to find doctors for me and my friends as well as help educate and now I get to help host the awareness walks to further the understanding of Chiari malformation!

2

Volunteer

Rating: 5

I absolutely had no clue what Chiari was when I met my new daugher in-law and grandson for the first time. My grandson Charter has Chiari and we wanted to know all we could about this disease. I jumped right in to learn about it and volunteer at the yearly Golf Tournament and Walk for Chiari. When I was doing research about Chiari the C&S site was incredibly helpful. I am so greatful for the great work that C&S does to help my grandson and all people with Chiari by educating them, the doctors and the continued support of poeple with this disease. Keep up the great work!!!

2

Volunteer

Rating: 5

Amazing organization!! I am going into my 4th year of organizing a walk through them, and they are a huge support to us, and all of those dealing with Chiari. They have accurate resources to those in need.

2 Kat D.

Volunteer

Rating: 5

Absolutely best organization out there for anyone that has Chiari Malformation! The amount of information available is just endless and so is their support. Each year they along with many volunteers like myself work hard to bring families, friends and individuals together for the annual Conquer Chiari Walk Across America that takes place in cities all over the United States. Funds raised by these events goes towards medical research and awareness. Special thank you to Heather (Heatheroo) Nebel to always being there to answer all our questions and providing information.

2

Donor

Rating: 5

My son has Chiari and we cant thank C&S enough. we would not have the knowledge to tackle this in our own without the valuable research being done by this organization. Because of the work they are doing new discoveries are being made everyday that will allow our family and many others like us to understand what chiari is and how to bring awareness.

2 Rick G.1

Client Served

Rating: 5

Terrific organization, my God Son Branden was diagnosed with Chiari Malformation 2 years ago. He has since been decompressed and additional medical treatment.C&S have supported us on this journey. Side benefit being able to support educate folks through their annual Walk has begin a great place to interact with people with the same challenges. A Big

2

Donor

Rating: 5

C&S Patient Education Foundation (Conquer Chiari) is an amazing nonprofit! My nephew has Chiari, and Conquer Chiari is committed to furthering awareness of Chiari as well as funding research to further our understanding about Chiari. Thank You C&S Patient Education!!!