Author: Nick, Medical Reporting Curator
A Community Approach to Cancer Research
My introduction to genetics, science and cancer care started when I was in college. A lot of my electives centered around the idea of cancer genetics and learning more about how that biology works a bit differently than some other genetic systems. Laboratory experience was a degree requirement as part of my major and during my sophomore year I was lucky enough to get the opportunity to work with a pediatric oncologist whose lab focused on looking at different immunotherapy techniques for various pediatric cancers. The project I assisted with focused on neuroblastoma. Through this work, I was able to get my feet wet in learning about how the cancer community looks at research and how they conduct different research techniques. I was also able to really understand how it's a very big community approach and is not so much of an individual aspect of “We're trying to be at the forefront” but rather “We're all in this together, we're trying to learn from each other, and we're trying to put new data out there so others can learn from what we've learned”. This “all in this together” mentality really stuck with me, and as I continued my undergraduate studies, I decided to pursue a fellowship to immerse myself into this work further. When applying, I was asked to write a mission statement, a brief summary of what was driving me to pursue the fellowship. For some inspiration, I took to social media and posted about the work I was doing, interested in any reactions I’d receive. I ended up getting a picture sent to me from an old classmate of mine of her cousin, who was about 3 or 4 years old, who had neuroblastoma. The picture was of him going through chemo, holding up a drawing of a superhero that he made, and saying, “Thanks for helping me get through this cancer”. I now had a picture I could look at and say, “If he's willing to go every day to get his chemotherapy done, I sure can show up to the lab every day and give my 100%, because I know that's what he's doing.” This moment still sticks with me and became my inspiration, and why I want to show up each and every day. It made me realize that the cancer community of course has a very strong scientific and medical backing, but behind it all, there's a strong, robust support system of patients who are extremely courageous and inspiring.
This idea of working within the collaborative cancer community really resonated with me even further. After graduating from college, I went to the Medical College of Wisconsin (MCW) and worked in their cancer clinical trials office, which is where I got introduced to Foundation Medicine. I helped coordinate the molecular tumor boards, which meant that I would collaborate with different individuals from Foundation Medicine on finding unique patient cases, and different genetic alterations that some of our physicians were interested in learning more about. After my work at MCW, I started my current position at Foundation Medicine as a medical reporting curator after initially inquiring about any potential internship or practicum opportunities required as part of a master’s degree in public health. My department, Translational Oncology and Clinical Reporting (TOCR), consistently works with genetic reporting and clinical reports and report out the different science studies and clinical trials available. As a medical reporting curator, I am responsible for ensuring information on test reports are accurately reflected – such as looking at the different mutations listed, updating different mutation statistics, prognostic information, or rearrangements that need to be named in a specific way, and making sure that therapy texts, new clinical trials that come out with new data on different therapies, and new FDA (Food and Drug Administration) approvals are also captured where appropriate. This role is a perfect encapsulation of everything I've been through from my undergraduate degree to the research coordinator position and has broadened my thinking, and my passions, in working with those within the cancer community.
Bringing Together Personal & Professional Passions
My professional interests in cancer care came together with my personal life when I decided to pursue an Ironman triathlon. For background, an total Ironman is 140.6 miles, which breaks down into a 2.4-mile swim, a 112-mile bike, and a marathon (26.2 miles for running) with the average time being just around 12 hours to complete. With my initial goal of completing an Ironman there was one slight problem – I had no idea how to swim. So, in January 2022, when I got the idea, I joined a gym that had a pool, jumped in with floaties on, and taught myself. With swimming being just one portion of the entire race, I also had to ensure that I had a good routine going to prepare myself for the other parts. Since October 2022, to keep me on track with my workout and goals, I’d post each week on my Instagram to prepare for the race in September 2023.
In addition to this personal component, I wanted to tie all of this hard work and training to something even bigger. When I signed up to do this, I had this idea of “What if we could make this race bigger than just a race? We could make this something that I can rally around, something where I can feel like I'm impacting people's lives” and that's how I came to the idea of wanting to fundraise for a cancer organization. With this idea, I talked with my Principal Investigator from undergrad and asked what he thought would be a good cancer organization to fundraise for. He mentioned the Leukemia and Lymphoma Society (LLS) as one of the larger cancer organizations that would be able to help someone like me, who wanted to get started in fundraising, with the resources and support to get involved. Throughout my preparation for the Ironman, I had regular check-ins with a member of LLS who acted as my liaison for the fundraiser. Any questions I had about getting the fundraising page organized, or getting different fundraiser ideas such as posting on Facebook, posting flyers, working with restaurants to do fundraiser nights, have all been answered by this support system. Patient advocacy organizations, such as LLS, have resources that can really help a fundraiser get off the ground, and I am so grateful for the partnership and help they have provided me.
After months of preparation, the day finally came. One of the goals I set for myself was to be mindful of the experience and take it all in - after all, you only get one first ironman. I also wanted to keep all of the passion I put into the LLS fundraiser and the 18 names of patients, angels and survivors – and the many others – on my jersey top of mind and as my main motivator throughout. This came to be very useful during the race.
As I reflect on race day, I have several thoughts and emotions looking back:
- The timing isn’t what matters most, it’s what happens along the journey that I’ll remember moving forward. One part of me was a little bit disappointed that I did not hit the “goal” time that I had set going into the race, but this disappointment is quickly overshadowed by the immense joy that I have when I can say “I am an Ironman.”
- No matter how much you prepare, sometimes things turn out differently, but you make the best of it and keep pushing. When I started the marathon, I was feeling amazing and was right on track for my goal time. The race spirits had other plans for me (and that is okay!). Around mile 9, I felt my stomach start to turn and cramp; I think many runners know this feeling. The next 17 miles were tough, and I had to mix in a little walking in between jogs to keep my stomach from hurting any more. As I would run by crowds of people or when people saw me walking, they would often point to my jersey and say, “Do it for those names” – it really gave me chills when I would hear that, and it instantly helped me get back to a run.
- Hitting a wall isn’t fun, but having motivators and a purpose will get you through it. As nighttime came around, I was on my second half of the marathon and was approaching the infamous mile 20. If you ask any ironman athlete (or marathoner for that matter) they will tell you that around mile 20 is when you likely “hit a wall.” I still struggle to put into words the feeling that I felt between miles 20-22 where it was pitch black from nighttime, and I hit my wall in the race. I could not really see where the running path was, and I felt my whole body go numb as I zig-zagged on the path, which was quite terrifying. However, those names written on my chest and all of my fundraising efforts got me through it all, and I never once thought of quitting. Even at the darkest and toughest moment of the race, I kept moving forward one foot at a time. It really felt like the mission and purpose behind the fundraiser started coming full circle at that moment. As I got to mile 25, one mile until the end, I saw my dad was waiting for me and he began to run alongside me. As we got closer to the finish line, he kept repeating to me, “Do it for the names on your chest.”
When I finally made it to the finish line, it was truly a surreal moment. I got to ring a bell to signify all the training and determination is ending in accomplishment. As I approached the bell, all I could think about was the special bell that many patients hopefully get to ring signifying their successful completion of cancer treatment. To this fundraiser with the Leukemia and Lymphoma Society, to the work that we do every day at Foundation Medicine, and to the many cancer patients that will go through a cancer diagnosis, I say, “Let’s keep ringing that bell!”
Fundraising is for everyone!
If you are thinking about fundraising but don’t really know where to start, I think that’s the best place to be because the hardest part for a lot of people is having the interest to begin in the first place. Once you have that interest, the worst thing you can do is nothing. Reach out to the organization that you are interested in fundraising with, make a plan, and work towards that goal because it will all be worth it in the end. If you have the interest and the passion, everything else just falls into place, and with the help of the organization and you leading the vision you can really accomplish amazing things!
Any fundraising you do is good fundraising. You may see stories of a person raising $100,000, and that’s great but it’s also sometimes not practical, but if you can raise $500 or $1,000 that’s great fundraising money that they didn’t have before that they now have to do something with, such as being able to grant a particular research project. No amount is too little to help the cancer community keep performing the vital research that is needed to help these patients.
If you would like to support Nick’s LLS fundraiser, you can do so here: https://bit.ly/NickIronman