Last Thursday morning, I was sitting in an early morning meeting at work, and suddenly, my phone started going crazy - buzzing with multiple notifications at a time, and continued for about 10-15 minutes. When the meeting had finished, I took a look at what all the commotion was about, and I smiled. The Hydrocephalus Association had officially announced on social media that I have been asked to speak at the upcoming 2016 National Conference on Hydrocephalus, in Minneapolis in June. Judging by the constant stream of notifications, messages, text, and emails, people were pretty excited! It's a huge honor to join the staff and all of the other inspiring speakers, and to continue to have the opportunity to connect with other people who are navigating life with this condition. I am humbled and a tiny bit overwhelmed by all the outpouring of love and support. And I am thankful for the opportunity to meet so many of you in person.
Registration is now open! There are many options for attendance, and even some financial assistance available. The conference is held every two years, and the location rotates from east coast, west coast, and middle of the country. If you are somewhere in the middle of the states or Canada, this might be the closest it comes to you for a while. Clifton and I were blessed to attend the last conference when it was really close to where we live, and that experience had a lasting impact on me. Seeing all of the children and meeting other hydrocephalus patients in person changed my life, and is one of the main reasons we are doing the advocacy work that we are doing now.
Since this announcement last week, I have had a few common questions:
Clifton and I wrote a short review of our experience at the 2014 Conference in Portland, and it's on the Association's blog, but I wanted to also share it here:
Traveling a Parallel Path
My name is Amy Booher, and my husband Clifton and I attended the 2014 National Conference on Hydrocephalus in Portland, Oregon. I was diagnosed with hydrocephalus at age 17, but this was our first time attending the conference. We were really excited to learn more about the available technologies and treatments, and connect with other families and patients with hydro. We had a fantastic experience, made new friends from all over the country, and were able to make face-to-face relationships with the staff of the Hydrocephalus Association. At the conference, we found a company that has an anti-siphon device that we had never seen before. After taking that information back to my neurosurgeon, I had one placed in my next surgery – something that has improved the quality of my life.
In the past year, I have launched a website/blog about my journey living with hydrocephalus, and I am excited to share what I learn at this year’s conference with the people from all over the world who follow our story online. Above all, I feel that the most important aspect of this event is the opportunity to connect people who are all traveling a parallel path. Clifton and I especially enjoyed watching all of the kids that attended. Seeing them laughing and freely expressing themselves was so amazing.
Daily life with hydrocephalus is challenging to navigate, and knowing that you are not alone is comforting. You can find more about our story on my website, www.amybooher.com or on Instagram @amy_booher. Here’s to another great conference, and here’s to the relentless pursuit of everything important.
Clifton & Amy Booher
My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x23), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.