Gabriele Grunewald is an inspiration. She has raced to titles on the track, and endured, while publicly sharing, the trials of cancer treatment (she is a survivor of adenoid cystic carcinoma, ACC). Her latest project, Brave Like Gabe, is a Foundation she created to support rare cancer research and empower all cancer survivors through physical activity. We caught up with Gabriele to discuss her treatment, her work with Brave Like Gabe, rare cancer research, and of course, her awesome exploits on the track.
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AthleteBiz (AB): Please share an update on how you are feeling and your current treatment status.
Gabriele Grunewald (GG): Last July through November I was a patient at Memorial Sloan Kettering in an immunotherapy clinical trial. It didn’t work quite as well as my doctor hoped so we added a liver-directed radiation therapy in December at Mayo Clinic here in Minnesota. My latest scan in January showed significant shrinkage in my tumors, which is great! I have been back on immunotherapy since then and we are hoping to see further shrinkage this spring. I will likely remain on immunotherapy longterm if we continue to have good results. I feel really good and don’t really have any side effects from immunotherapy.
AB: We all read about how unhealthy eating and exercise habits increases the risk of getting cancer. We also know that cancer risk can be hereditary. Neither of these things apply to your cancer, adenoid cystic carcinoma (ACC). What have you learned about possible causes of ACC?
GG: Yes, there are a lot of different reasons cancer happens in our bodies. For ACC, there are still a lot of question marks and most of the doctors who I’ve talked to about this would say that my cancer likely stems from a random genetic mutation — one that they may not have even discovered yet. Even though it’s not correlated with anything environmental, hereditary, or habits, I do think that staying physically active and eating well will significantly improve my performance status as a patient and hopefully my overall survival.
AB: Your husband Justin is a physician. How helpful has that been as you both have navigated the clinical system and treatments choices?
GG: Justin’s knowledge and experience as a doctor has been immensely helpful over the last two years especially, but I think we would both agree that navigating the cancer world as a young adult with a uniquely rare cancer has still been a big challenge. We are getting better at being advocates for my health and realizing the value of connecting with other people in similar situations and learning from them. Having a friend or family medical expert in your corner is a very good thing and can help take some of the burden off the patient. I’m so grateful for Justin!
AB: ACC is a rare type of cancer. Rare cancers generally get less attention from top notch researchers than more common cancers. How do you think your Foundation can help with this?
GG: One of my primary reasons for starting Brave Like Gabe was to continue to be a voice and a face for rare cancer patients to highlight the severe lack of treatments for these “orphan” cancers — and ultimately contribute funding for more research. I didn’t fully understand what it meant to have a rare cancer diagnosis when I first found about my disease almost nine years ago, but it was quite overwhelming when I truly came to understand how little the medical world knew about my cancer. Much of the general public is not aware of the fact that rare cancers aren’t all that rare — up to 50% of new cancer diagnoses are rare. And they also don’t know how little funding is available for clinical trials and basic science research to understand these unique cancer types. It is my personal belief that everyone with cancer should have a fighting chance — and right now that isn’t the case for most people with a rare cancer, but we can change that through dedicated funding and research efforts.
Rare diseases are often lurking in the shadows of public health problems — but not today! Today we emerge from the darkness of our conditions and share our stories because this is our day to raise awareness and ask for help: #RareDiseaseDay2018. I am one of the 30 million Americans living with one of the 7,000 different types of rare disorders, with more being discovered each day. Odds are very good that you know someone personally with a rare disorder — 10% of Americans have one. Some people hear the word “rare” and immediately think — “if it’s so rare, why should we really care? We should only focus our resources on treating diseases that affect larger groups.” But in reality, if all the people in the world with a rare disease lived in one country, it would be the world’s 3rd most populous country. My rare disease is a rare cancer, and most people are unaware of the fact that about half of all cancer patients are fighting a rare cancer for which there are often very limited treatment options. Since the Orphan Drug Act was passed in 1983, only 326 new drugs were approved and brought to market for all rare disease patients combined. We need to continue making progress on understanding and treating all of these diseases — so if you’re a patient, share your story and get involved in your cause. Patient involvement is the key to effective research for rare diseases! Everyone has a role in solving the rare disease dilemmas — patients, researchers, drug companies, clinicians, and lawmakers! Let’s care about rare. Let’s use our voices and work together to improve outcomes for all those suffering from rare conditions. . . . #rarediseaseday #rarediseaseday2018 #icareaboutrare #shareyourrare #showyourrare #rarecancer #adenoidcysticcarcinoma #bravelikegabe
AB: People may not realize that you and Justin are donating a big chunk of your own money to get your Foundation started. Tell us about that decision.
GG: We were truly overwhelmed with support through AthleteBiz’s crowd-funding campaign for me and my treatments/travel last summer and we never expected to raise that much money. We appreciated the support so much and definitely have used some of it for medical expenses and travel to and from my many appointments, but we are really passionate about using a portion of those funds raised to start Brave Like Gabe. We want our supporters to know that we appreciate their support for my personal battle so very much but that the fight to beat rare cancers is bigger than just my story and we truly want to make a difference.
AB: You have stated repeatedly how grateful and overwhelmed you are by the support you’ve received from the track & field community and the public. We understand that you plan to reach out personally as best you can to donors?
GG: Yes! I am so incredibly fortunate to be a part of this amazing community and I want to let my donors know that if they contribute to Brave Like Gabe they will be hearing
from me personally. Hand-written thank you notes will be going out to each donor!
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Let’s talk track!
AB: Was there a race or a moment when you first realized you had what it takes to be a world class runner?
GG: The 2010 NCAA outdoor track season (the year after my initial diagnosis and treatments in 2009) was definitely the breakout season. The one race that I would pinpoint would be NCAA Outdoor Track & Field Championships in 2010, the first and only NCAA championships I qualified for as an individual. I set the school record in the prelim and took second in the final — that’s when I knew there would be more running ahead of me. I have so many great memories from that magical season!
AB: You’ve had so many running career highlights and titles. If you had to pick one as your all-time favorite which would it be?
GG: I would have to say that it felt great to win a US title indoors in the 3000-meters in 2014, despite all the drama of that weekend. I remember such a feeling of pride and accomplishment to wear the USA uniform at World Indoors in Poland in 2014 — it was very special.
AB: Your unwavering optimism, bravery and beautiful smile in the face of all this has inspired millions of people. What advice do you have for all of us about maximizing our lives?
GG: I think the essence of time is critical for all of us to think about in our daily lives. It’s not something that is normal conversation in our culture, but for a cancer patient — it is. I think having that constant reminder of my mortality can be scary and bewildering at times, but other times it can be a great motivator and helps me clarify what’s most important in my life. I’m realizing now that I don’t have a whole lot of control about the length of my life, but I have all the control over the quality of it. I want to make a positive impact while I’m here and knowing that time is finite motivates me to live in the present, take action, and do what I can to make a tangible difference. That’s all we can do!