My name is Aaron and I have Crohn’s Disease and a really rare genetic metabolic bone disease called Hypophosphatasia. My original diagnosis of Crohn’s in 2009 is where my advocacy work began, and then more recently being diagnosed with Hypophosphatasia which is classified as ultra-rare disease has pushed me into advocating for that as well. Ever since my diagnosis, I have been on multiple medications, many ER visits, and hospital stays and also have endured 4 hip replacements due to Avascular Necrosis and Hypophosphatasia. My own journey with chronic illness is what drives me to advocate for other patients and to help them find out more about the disease and provide any support they need.
I originally started advocacy with a Facebook page Support Crohn’s Disease and Ulcerative Colitis back in 2010 after my diagnosis and just wanted to meet others with the disease and help them. Eventually, I realized that the page was becoming much bigger and was having more of an impact than I initially ever thought it would. The page opened up the opportunity for me to really start advocating for patients with IBD and more than that, I was able to really help and support patients with their IBD journey. More recently after my rare disease diagnosis I have decided to make my advocacy more inclusive of multiple diseases to help a broader range of patients, especially the rare disease and hypophosphatasia community.
Through all of this, I have been in college and originally my goal was to become a physician and work with IBD patients, but as my health activist work grew, so did my curiosity for science. My junior year of college I started doing research and the more I learned the more I realized I wanted to pursue a career in scientific research. In May 2015 after 6 long years full of multiple surgeries and hospitalizations I received my B.S. Degree in Biology Medical Sciences. I have a Master of Science in Biomedical Research where I worked with gut bacteria trying to identify their role in IBD. I owe a lot to my mentor and friend Dr. Erin Norcross who has played a huge role in my life and training me to be a scientist and how to think critically. Her advice and support has helped me become who I am today.
My passion for science stems from my passion for helping patients, and through research, I intend to do just that. It’s important to make the distinction between advocacy and education because people need to see that the information they are getting comes from someone who actually is qualified as it pertains to science. That’s why I am so open about my schooling and degrees because when I write something scientifically I want people to trust my work. I also want people to see how it is possible to achieve your goals. My passion for advocacy and for science have helped shape me into who I am today.
Here are some Achievements I am proud of.
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Disclaimer: I am not a medical professional, any medications, health products etc that are discussed here should be taken up with your personal physician. The opinions expressed here are mine, and mine alone they do not constitute the views of any company or institutions that I am involved with.