Fighting A Disease With No Cure

Organizer Jackie Miller

Let’s play the imagination game. Imagine a world of severe headaches, brought on by coughing or sneezing. Now, imagine extreme pain in your neck and shoulders, trouble swallowing or speaking, becoming weak and numb in your arms or legs, losing balance and a host of other symptoms. Sounds awful don’t it?

That is a just a taste of what approximately 1 in 1,000 people feel on a day to day basis.

The cause of these symptoms is a neurological disorder called Arnold Chiari Malformation.

ACM 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 is a poorly understood disease and for all diagnosed a deplorable experience.

There is no cure for Arnold Chiari Malformation. There are treatments such as surgeries, therapies or medication to ease the pain.

The C&S Patient Education Foundation, also known as Conquer Chiari helps raise awareness, provides support services and sponsors research to advance the understanding of the disorder, but they could not do it without the help of family and friends affected.

For the past seven years, Sept. 20 has been the day where Conquer Chiari paints the U.S. purple in honor of ACM by sponsoring a walk. At this year’s Conquer Chiari Walk Across America (CCWAA) over 10,000 people came together to educate, conquer and fight the rare disorder.  There were 77 walk locations in 41 states. The CCWAA is a series of local awareness and fundraising walks held across the country.

walkfinal                                         xz

The city of Victorville had their first Conquer Chiari walk at Maverick Stadium where 95 participants supported and brought awareness to Chiari. The day consisted of a kid’s corner, raffling of prizes, bake sale and craft sale. All proceeds were used to fund Chiari research, education and awareness programs.

Seven out of the 95 participants in the Victorville CCWAA were diagnosed with Chiari. Organizer of the walk, Jackie Miller was one of them.

Miller stood in front of the crowd of participants as she shared her story with great grief.

“I started walking three years ago for my son because he has gone through a trial,” Miller said. “My son has had a total of 11 surgeries and shortly after his last surgery, I found out I had it,” said Miller. She continued, “The only thing I can tell you, you have to bear with someone who has Chiari. They get angry sometimes, or sad. Bear with them, and ask if they are okay. See how they are doing because it helps to know that people understand you,”

There were many in attendance supporting loved ones diagnosed with the condition.

Chiari surgery survivor, Britany Smith was in attendance along with her family and friends. All of which wore t-shirts in honor of her, saying “#TeamBritany”.

Supporter Domonique Ramirez said, “Our friend Alecea is what brought us here, she has Chiari and we wanted to support her. I want today to consist of positive energy and more awareness,”

The day was filled with just that, positivity. After the event, Miller posted a great message on the Victorville Conquer Chiari Walk community Facebook page just to show her appreciation for the turnout.

“I feel that the walk went great, and everyone seemed to be happy,” said Miller. “I don’t make great speeches so I’m glad you all dealt with me in a great way. All the volunteers were awesome and I’m so grateful for all of them. Next year I hope to add more things and also make things go a little easier! Again, thank you everyone!”

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.