I will never forget the day I was diagnosed with Chiari Malformation I. It was a day of both relief and new-found fear, as it ended a year-long journey of uncertainty, but began a new journey of the road to treatment. After 7 MRIs, 4 specialist visits, 3 surgical consultations, and countless days of pain and worry, I underwent posterior fossa decompressive surgery on June 6th, 2016. Immediately afterwards, I felt a wave of relief, energy, and optimism that my life had been missing for so long. Many experts say that post-surgical Chiari patients can tend to make radical decisions or find a new passion for a random topic, and for me, mine was a new-found desire to become a motivational speaker. I had it in my mind that I wanted to give a TED Talk, and knew that I wouldn’t stop until it was accomplished. Now it may not have been a literal TED Talk, but I did accomplish that goal and even more than I’d dreamed, and that came in the form of “Brainspire.”
Brainspire was event that involved a few months of planning and coordinating with the CEO of the Chiari non-profit, “The Chiari Project,” and I couldn’t have been more pleased with the event. We had three speakers, in addition to myself. The first, Lisa Morgan, was my personal role model regarding Chiari Malformation awareness, as she has four children facing the condition and has never stopped fighting for them. She shared countless advice with me during my battle, and I was thrilled to hear her share it with the members of the audience. The second speaker was Shelby Mann, a peer of mine from high school, who suffered from a seizure-causing brain tumor. She has undergone surgery to remove the tumor, but resultant scar tissue has still left her struggling with seizures, but she maintains a positive and encouraging attitude that she shared with the audience. Lastly, Alex Hengge, a dear friend of mine from CWEST Women’s Honorary, shared a heart-warming story about her father, who is currently suffering from Lewy Body Dementia. Alex’s willingness to share a very personal and tough story for the very first time with others just to support my event and mission is something that I’m incredibly grateful for.
Brainspire was event that involved a few months of planning and coordinating with the CEO of the Chiari non-profit, “The Chiari Project,” and I couldn’t have been more pleased with the event. We had three speakers, in addition to myself. The first, Lisa Morgan, was my personal role model regarding Chiari Malformation awareness, as she has four children facing the condition and has never stopped fighting for them. She shared countless advice with me during my battle, and I was thrilled to hear her share it with the members of the audience. The second speaker was Shelby Mann, a peer of mine from high school, who suffered from a seizure-causing brain tumor. She has undergone surgery to remove the tumor, but resultant scar tissue has still left her struggling with seizures, but she maintains a positive and encouraging attitude that she shared with the audience. Lastly, Alex Hengge, a dear friend of mine from CWEST Women’s Honorary, shared a heart-warming story about her father, who is currently suffering from Lewy Body Dementia. Alex’s willingness to share a very personal and tough story for the very first time with others just to support my event and mission is something that I’m incredibly grateful for.
One unfortunate circumstance for the event was that it had to have a date change to the Sunday before finals, which really hurt attendance. Despite this, we still had roughly 40 people attend, a UC pep band play, and a comedian perform for the event. Although I would have loved to have a full auditorium, I am proud that 40 people have a new-found support for those suffering from neurological illness, and that they’ve gained advice from our speakers regarding mindset and positivity that they can apply to any hardship in life. We did not end up making a profit on the event towards The Chiari Project’s initiatives like we’d hoped due to low ticket sales and low donations for food, but I’ve learned many things about the event that can be applied in the future.
I’m proud to share that other students at other universities around the country have stepped up to host subsequent Brainspire events. I’m excited that we’ll be increasing education about neurological illness around the country, and I’ll always be proud that I helped start this movement. I’ve learned several things from my own event that I’ll be sharing with these other students. Mainly, this advice boils down to one thing: start early! As it was the first event, I really underestimated how long it would take to plan, especially when it came to gaining donations. I had to spend a lot of money out of pocket to feed the attendees, but had I started earlier, I could have gathered food donations to forego the cost. Starting early also would have helped gain more attendees, which means more ticket sales, and ultimately, more people educated about neurological illness and positivity during hardships.
I’m proud to share that other students at other universities around the country have stepped up to host subsequent Brainspire events. I’m excited that we’ll be increasing education about neurological illness around the country, and I’ll always be proud that I helped start this movement. I’ve learned several things from my own event that I’ll be sharing with these other students. Mainly, this advice boils down to one thing: start early! As it was the first event, I really underestimated how long it would take to plan, especially when it came to gaining donations. I had to spend a lot of money out of pocket to feed the attendees, but had I started earlier, I could have gathered food donations to forego the cost. Starting early also would have helped gain more attendees, which means more ticket sales, and ultimately, more people educated about neurological illness and positivity during hardships.
Brainspire has helped me become a life-long advocate for Chiari Malformation and neurological illness. For starters, this event led me to be asked to emcee TEDx UC’s 2018 mainstage event, Constellations, which was an experience that I absolutely loved and that exposed me to many amazing leaders in my community. I’ve found a true love for public speaking (as weird as that is), and I’m so excited to continue speaking to audiences everywhere.