Awareness happens ALL year. For people that want to support our mission, but don't have the time it takes for a larger event like Conquer Chiari Walk Across America, we welcome Individual Fundraising efforts. If you are interested in organizing a fundraiser that involves selling tickets, requires insuranc , or signed contracts, please email email@example.com or fill out our Fundraiser Proposal Form to get started.
Mightycause is our preferred online fundraising website, click on image to set up a fundraiser today.
Katherine Melone | Middletown, NJ- Being sick is never fun. Being sick when you are not sure of the cause is scary. Being diagnosed with a rare brain disorder that even doctors don't know much about is terrifying. When I was told that my increasing illness was caused by a brain disorder the words RARE, INCURABLE and PERMENANT BRAIN DAMAGE were all I could hear. After over a year of visiting many doctors in many states it was clear that even experienced neurologists and neurosurgeons did not have much experience with Chiari. Having a rare disease is a lonely scary experience.
I am fortunate to have a supportive family that helps me deal with my daily symptoms and have as normal a life as possible. I often wonder what life would be like had the doctors understood and agreed upon my condition earlier. Would I feel better than today?
It is for these reasons that I took the wonderful opportunity in Track Friday to raise money for research into this disease. If I had known about the dangers of my "benign" chiari I would have been much more in tune with my symptoms as they increased over the years. I hope that more research will help people to have the diagnosis made and their disorder dealt with before they suffer permanent damage. And I hope that there will be a cure.
Since 2013 Katherine has raised $7,198 on Track Friday!
Kim De Haan and Jon Perz | Michigan The Annual Walker cup has raised $1,670!
A few years ago my sister was diagnosed with Chiari Malformation and, just last year my little cousin was as well. Having never heard of this ourselves we all helped in researching this unknown ailment. Even as we found out how rare Chiari is we were all shocked when we had to tell doctors how to spell it. After watching all the struggles my sister and cousin have gone and continue to go through, we wanted to do something to help. Last year was the first year we did a Fundraiser and after the first day we decided this would become an annual part of the Walker Cup Tournament. If for nothing else, at least we could help to raise awareness.
The Walker Cup is an annual adult hockey tournament in July that takes place at Walker Ice and Fitness Center. Each weekend is a different bracket/division according to the player’s skill level. This was the breakdown of this year:
July 7-9th Silver, Division Champions: Great Lakers
July 14-16th Gold, Division Champions: GR Bandits
July 21-23rd Bronze, Division Champions: Wolverine
July 28-30th Co-Ed, Champions: Backdoor Bandits
Each Saturday we had a cookout during the break between games so that everyone could relax and meet players from other teams. We also had shirts available, one style feature our generous sponsors and the other was the Chiari style and said "Keep Calm and Conquer Chiari". Displayed along with the shirts and trophies we had basic facts, Conquer Chiari flyers and in depth descriptions and pictures of what having this means.
Our main goal is to ensure a fun, safe tournament and raise at least an awareness of Chiari.
This year we were blown away by everyone's generosity (And by how many people really wanted to learn more) and are so pleased to report we have raised a total of $930!
Kristen Huston | Salem, OH- The 1st wine tasting fundraiser was held on October 16, 2016 at Salem Golf Club and raised over $1,200!
Kristen’s Story: I decided to do this fundraiser was that so many people with Chiari Malformation go undiagnosed or misdiagnosed for years! So many doctors aren't aware of all that Chiari entails. There are so many factors that go into it that I feel aren't known by patients and doctors. I myself was told by one doctor that I was making it all up and then a few weeks later was told by a very well-known surgeon from Cleveland Clinic that I had to have surgery! I want to help with the research and education to help get the awareness out there! So many people have problems for years! Many people have multiple surgeries! Some Doctors dive right into surgery and don't have all the answers. I hope & pray that if we can raise money to help complete the research so that we can one day saying there is a cure for Chiari, so many people could finally be helped.
Since 2013 Katherine has raised $7,198 on Track Friday!
Tonya Barrows & Family | Queensbury, NY- The 4th Annual "Smashing Chiari" Softball Tournament was held on September 10th, 2016 and raised $6,400! Overall the event has raised $20,832 for Chiari research! The family holds both "Smashing Chiari Softball" and "Jake's Fishing For a Cure" annually!
Jake's Story: Jacob was diagnosed August of 2012 at the age of 8 with Chiari Malformation Type 1. From the age of two, we knew something was just not right. He lost vision in his left eye for awhile, he had speech and fine motor delays, chronic ear infections, balance/coordination issues, and the list continues. By the age of four, he was having severe memory loss and staring spells. I was first told he had a stroke in utero. After the MRI, it was determined he did not and they were unsure of what was going on and would keep a close eye on him. (They missed the Chiari!) During the winter of 2012, he started getting crippling headaches and by the spring, we were sent to a specialist in Schenectady, NY. After another MRI he was diagnosed and it was quickly determined surgery was his only option. Dr. Adamo at Albany Medical Center did the surgery February 7, 2013.
After we left the neurologist office in August 2012, our lives changed forever. The research began and I was on a mission for some answers. The doctor did not read his MRI correctly when he was four and my baby had to suffer for four more years. As I researched this, I found we were not alone. There's not enough awareness or information out there for Chiari.
I'm not someone that sits back and watches things happen. Losing is not an option and this is not going to control my sons life. I'm a big softball enthusiast and have played in several charity softball tournaments so I thought that would be a great way to raise awareness in our area and some money for research.
Jake Barrows & Family | Hudson Falls, NY- Building on the familys' fundraiser in September of 2013, "Smashing Chiari Softball Tournament", Jake initiated another fun event earlier this year: "Jake's Fishing For a Cure". His event made the papers in Hudson Falls. After the word spread around town, the family was contacted by the Adirondack Phantoms hockey team offering to help with Jake's fundraiser. The Fishing tournament raised $4,300 dollars (including $425.00 on behalf of the Phantoms hockey team).
"This 9 year old worked hard and shared his story about his journey with Chiari and his passion for fishing. We are very proud of him" ~Monther, Tonya Barrows