Madison Magazine: Please describe your involvement with Conquer Chiari–Madison.
I first learned about the organization last year after I was diagnosed with [Chiari malformation]. ninds.nih.gov/disorders/chiari/detail_chiari.htm When I was recovering from my surgery, I went online and Googled Chiari, came across the ConquerChiari.org website, saw that they put on an annual walk across the country to help raise awareness for Chiari malformation. I signed up to do the walk in Phoenix, Arizona, and thought the event was amazing. On a whim, I decided to put my application in to be a site coordinator here in Madison, and I was picked. This is my first time organizing something of this caliber with little experience, but with the help of Tara, I think it is coming together pretty well.
MM: What do you want others to know about Conquer Chiari–Madison?
Chiari malformation is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms. It can strike children and adults and cause crippling headaches, neck pain, balance problems, trouble breathing, numbness and weakness in the limbs, and a host of other problems. To date, there has been very little research on Chiari and fundamental questions regarding its underlying cause, diagnosis, and treatment remain unanswered. It is estimated that Chiari affects 300,000 people in the U.S.
MM: What has been the most beneficial element of this organization for you?
Conquer Chiari offers several different ways to become involved in your community and it is a non-profit organization, so all the money that is raised goes exactly where it is supposed to! There are support groups that are out there for “Chiairians” and their families. There is just an overwhelming support that you get from every member on the board and it is just amazing. The Conquer Chiari website offers a lot of information about the disease and gives you the ability to connect with others across the country to learn more because not one single case of Chiari malformation is the same.
MM: How has the Conquer Chiari–Madison and its events enhanced the Madison community?
Only time will tell! This is the first year (or it has been a really long time since) we are having the event here in Madison. We have reached out to many local businesses asking for support in either donations and/or sponsorship and we have received an overwhelming number of gifts and are very appreciative for all the support. Governor Scott Walker has declared the month of September Chiari Awareness month, and I have the proclamation declaring that, which is awesome! Hopefully this is a stepping stone for years to come on increasing awareness for Chiari malformation.
MM: Please tell us about the upcoming Conquer Chiari–Madison Walk.
The Conquer Chiari Walk Across America is an annual fundraising and awareness event comprised of a series of local walks held on the same day. In 2014, the event was held at seventy-seven locations, involved more than 13,600 participants, and raised more than $715,000. The walk is being held September 19 at Brittingham Park, 829 W. Washington Ave. in Madison. Registration starts at 8:30 a.m. and the walk is scheduled to start at 10:30 a.m. The walk distance is variable and at the participants fitness level. We are working on getting a DJ for the event as well. Following the walk there will be a brat fry (burn) —$5 for a plate—along with a raffle where we will sell tickets $20 for an arm length’s worth. We have prizes ranging from an autographed Green Bay Packer football to free pizza to a Brain Balance Gift Certificate (valued at $500)!
MM: How can the community get involved with both the Conquer Chiari Walk and the organization as a whole?
Come out and participate! It will be a great opportunity to meet some new people, get some exercise, eat some food, and learn more about Chiari Malformation. We are looking for volunteers to help with set up, registration, and clean-up. We are also looking for five Kohl’s employees. If we get that many, Kohl’s will donate $500! Educate yourself: visit conquerchiari.org or visit my Facebook website: facebook.com/CCWAAMadison where we will start posting more fun facts about Chiari and ways to get involved! You can also go out to the Hu Hut off Junction Road in Middleton on September 24 from 4–8 p.m.—they will be donating 10 percent of earnings to Conquer Chiari.
The Conquer Chiari Walk – Madison will be held on September 19th at Brittingham Park. For more information visit conquerchiari.org