“The mission of the International Chiari Association is to educate and inform the public about Chiari malformation. It is the ICA's goal to bring awareness and research to this little-known, serious neurological disorder to help those with Chiari and the people that care about them.”
Q: Pete, you founded ICA in 2011 with the assistance of some of your fellow Santa Barbara High School alumni. Please tell us briefly about the disease and why you started this 501(c) (3) nonprofit, public benefit organization.
A: Chiari (kee-AR-ee) malformation is a serious neurological disorder where the lower part of the brain, the cerebellum (which controls balance and coordination), descends into the spinal canal.
During my journey, I was frustrated at the lack of resources and support for Chiari, and that is why I started the International Chiari Association. There are 33 people on the ICA team (board members and advisors combined). I've known the entire board since we were all at Santa Barbara High School. I've my known my VP/treasurer, Robert Mislang, since Cleveland School.
Since I know the board's personalities and they know mine, we were able to hit the ground running, not walking, and this was especially important because the ICA has been a pioneer in the Chiari world.
Q: Please share more about your own personal journey with Chiari.
A: I was born with Chiari, but it took 36 years before I was diagnosed. While 300,000 people have been diagnosed with Chiari in the U.S., it is not well known — even among doctors and nurses. I always had to work hard to help take care of my family so I figured that I should be tired. I should have pain. When I did complain, doctors couldn't find the problem. Finally in 2000, I had to resign my job as a magazine editor. I then went from doctor to doctor for eight straight years before being diagnosed with Chiari in 2008. An MRI revealed the malformation and I underwent surgery on May 11, 2009.
While there is no cure for Chiari, my health has improved dramatically. I feel so much better; it is like night and day different.
Q: On the ICA’s website you state, “I often tell people that we can’t change the past, but we can make things better for the future.” Please explain how this mantra affects how you run ICA.
A: The past is history and the future is a mystery. We can only learn from the past, but we can focus on today and prepare for the future. That is the focus of the ICA. We help people every day, as well as raise money for Chiari research and report on Chiari research that is taking place all over the world.
Q: Pete, you have suffered greatly from this debilitating disease. What advice would you offer someone who is battling any serious illness?
A: You have to keep fighting the good fight. There are always people who are dealing with more problems than you are. Some days they may be harder to find, but they are out there. Looking back, there were many days when I wanted to give up and cried myself to sleep in so much pain while wondering what misery tomorrow would bring. As I often tell people, you can't give up. What if I gave up? I would be in a wheelchair without a Chiari diagnosis and the ICA wouldn't exist. I'm thankful every day that I have had the courage to hang in there.
Q: Please tell us about your upcoming third annual Chiari Awareness Celebration from 11 a.m. to 4 p.m. Saturday, Sept. 6 at Tucker’s Grove, and how Santa Barbara businesses and individuals can help — and also enjoy this family-friendly event!
A: I'm looking forward to our celebration as it will feature food, drinks, live music, a silent auction, arts and crafts, an appearance by ICA mascot Courage the Bear and much more. Admission and parking are free. If someone and/or their business would like to make a financial donation or a silent-auction donation, their tax-deductible gift will also be acknowledged during my opening remarks at the event, as well as on the ICA's website, Facebook page and Twitter page.
There are many great causes out there, but the ICA is an all-volunteer nonprofit organization that helps people and spreads Chiari awareness every day. You will be making an immediate impact.
— Tracy Shawn, M.A., lives and writes on the Central Coast of California. Her award-winning debut novel, The Grace of Crows, is about how an anxiety-ridden woman finds happiness through the most unexpected of ways — and characters. Dubbed a “stunning debut novel” by top 50 Hall of Fame reviewer Grady Harp, The Grace of Crows has also been hailed as an accurate portrayal of generalized anxiety disorder and a healing opportunity to the readers. Click here for more information about Shawn, or click here to visit her author page on Facebook. Follow her on Twitter: @TracyShawn. The opinions expressed are her own.