Chiari Online Support Group

Hello Everybody, I am your new intern!

My name is Jakob, I am an intern for this page! I am so excited to learn more about Chiari and about all of you! First, here are some things about me:
I am a rising sophomore at St. Lawrence University, about 20 miles from the Canadian border in New York. I am undecided but will probably major in chemistry focused neuroscience, with a minor in mathematics and religion. I am still not sure what I want to do but have been leaning towards pediatric anesthesiology. I grew up in Salt Lake City, Utah where I spent my childhood nordic skiing competitively and enjoying the mountains surrounding me! I am currently on a hiatus from skiing and have chosen to pursue my passion for moving through the mountains quickly through trail running and mountaineering! I recently was accepted to the U.S. Junior Skyrunning team which has been a big achievement for me.

I suffered through a persistent brain tumor that began when I was two years old. I now have ataxia, mostly on the right side of my body, due to my second surgery and possibly other treatments. I joined the ataxia support network in 2018 when I was dealing with worsening symptoms and college applications. I was fortunate enough to serve on the youth advisory committee at the hospital I was treated at. I decided to become an intern at Ben’s Friends when I moved on to college and could no longer give back to my community in the way I had been (there are not many hospitals in the middle of nowhere). I have been able to adapt and participate in many outdoor opportunities. Aside from running and skiing, I enjoy cooking and baking, I am also particularly interested in the nitty-gritty of nutrition and agriculture.

I am beyond excited to learn more from all of you. I have been pretty involved in the medical community for a while. After my second surgery, a lumbar shunt was put in. It ended up malfunctioning and shunting CSF too much which created negative pressure headaches. This is a bit of the opposite to the positive pressure headaches that can be attributed to Chiari in some cases. But I know just how painful those headaches can be. Please reach out with questions or conversation!

Jakob
He/His

1 Like

Hi Jakob! Thank you so much for joining Ben’s Friends as an intern!

Sharon from ModSupport