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We are delighted to introduce the 20 members of our 2024 MIB Agents Junior Advisory Board (JAB) board, led by President, Samantha Ulloa and Vice President, Max Penzer! Our JAB members are the heart of our organization and serve as a voice for young adults in the osteosarcoma community to help influence the direction of MIB Agents programs, education, and research for the benefit of all OsteoWarriors, families, doctors, researchers, and industry. JAB Members serve a term of one year and meet monthly. In addition to helping build current programs and design future programs to meet the unique needs of OsteoWarriors and their families, JAB members participate in Childhood Cancer Alliance Action Days in Washington DC, represent patient voice in industry and academic patient panels, and create awareness via the MIB Agents osTEAo AYA podcast.
Hometown: Houston, TX
Age: 16
Diagnosed: 2019
Primary tumor location: Left femur
Current status: NED since Sep 2020
What are you up to these days? School hanging with friends and baking!
Something most people don't know about you: I loveee cats, especially my cat Casper!
Advice for newly diagnosed osteosarcoma patients: YOU'RE NOT ALONE!! Being diagnosed with osteosarcoma is one of the hardest and most life changing things that someone can go through, but making the best of the worst situations is the best thing you can do for yourself.
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Hometown: Saint John, Indiana
Age: 18
Diagnosed: 2017
Primary tumor location: Proximal femur
Current status: NED
What are you up to these days? I’m a freshman at Creighton University in Omaha studying biology. In my free time I like to play guitar and golf.
Something most people don't know about you: I have a golden retriever named Stella.
Advice for newly diagnosed osteosarcoma patients: Try to find a balance in knowing more and not overwhelming yourself. Initially, I was looking all over the internet for information about osteo, thinking I would better manage my diagnosis if I knew more. For the most part, it only stressed me out. Rather than going down a rabbit hole, try to get comfortable asking your doctor/surgeon questions.
Hometown: Lexington, Massachusetts
Age: 17
Diagnosed: 2020
Primary tumor location: Distal left femur
Current status: NED
What are you up to these days? I am beginning to walk without crutches and working with PT to get back activities like running and biking. I am also on my school's Science Olympiad team, and I spend a lot of my free time practicing and working on projects in preparation for competitions.
Something most people don't know about you: I love airplanes and have built and flown model planes modeled after WWI, WWII, and modern planes. I've flown electric planes, gas-powered planes, and even planes powered by rubber bands.
Advice for newly diagnosed osteosarcoma patients: Don't stop socializing or meeting with your friends and find communities of other osteosarcoma patients who you talk to or get advice from. Talking with friends and others with osteosarcoma really helped me get through treatment and surgeries!
Hometown: Houston, TX
Age: 17
Diagnosed: 2014
Primary tumor location: Proximal right tibia
Current status: 9 years NED
What are you up to these days? I am choir president, a medical assistant intern, and a senior in high school and going to Texas A&M University for Nursing.
Something most people don't know about you: I drive a minivan.
Advice for newly diagnosed osteosarcoma patients: Find an experienced cancer patient or parent to ask for help and advice.
Hometown: New York, NY
Age: 17
Diagnosed: 2017
Primary tumor location: Femur
Current status: NED
What are you up to these days? I’m applying to college and attending a performing arts public high school in Astoria, Queens as a Fine Arts major. I’m also a camp counselor, I publish articles, I bake, and play piano.
Something most people don't know about you: I self-taught myself to play ukulele and guitar, and while I love basketball, baseball, football, and more, I’m obsessed with Formula 1.
Advice for newly diagnosed osteosarcoma patients: Get comfy socks, stock up on snacks that you will always want to eat, and drink water. You can always rely on the people who are supporting you, whether it be doctors, nurses, family, or friends. Don’t be afraid to keep issues and fears to yourself—your support system will help you. You will always deserve to be cared for.
Hometown: Ridgewood, New Jersey
Age: 21
Connection to osteosarcoma: Being best friends with Vicky Hoy, current member of JAB '24 and former president of JAB '23. I actively supported Vicky throughout her treatment and learned so much from her experience.
What are you up to these days? I am currently trying to live a balanced life while finishing my Health Science and Psychology degrees at Brandeis University!
Something most people don't know about you: I paint and draw abstract art of anatomical hearts because I think it looks super cool!
What advice would you give on how to best support a friend or family member who has been diagnosed with osteosarcoma? Listening deeply, and being as available as possible to your friend/family member (while taking the time to rejuvenate and heal your own self) is incredibly important. Listening to their thoughts and feelings about what they're going through and responding with love and interest is a crucial part of caring for a loved one who has been diagnosed. Spending quality time with your loved one, whether that takes the form of accompanying them during their treatments/scans/testing/spending time with them in the hospital or hanging out with them doing things that are unrelated to what they're going through is also imperative (as distractions from what your loved one is going through can be very healthy and necessary). I personally made it clear to my friend who was diagnosed that there was no such thing as "TMI" pertaining to her experience (or anything for that matter), and I believe that made her feel comfortable with sharing anything and everything about her experience having cancer with me. I think it was important for her to have this kind of "safe haven" within a friend, where any part of her experience having cancer could have been shared with me if she wanted that. I would not initiate conversations about their cancer, prognosis, scans, experience, etc. with your loved one unless they make it clear they would appreciate it if you did. I believe it is important for someone diagnosed with cancer to talk about their experience only if and when they want to.
Having cancer, especially as a young adult, can be isolating. Offering your loved one room to share their experience, to whatever extent they desire, can help them feel very loved and supported during this isolating time. Everyone has different levels of willingness and comfort when it comes to this, and those who experience a loved one being diagnosed with Osteosarcoma will have to evaluate what they are personally comfortable with when it comes to these kinds of conversations and exposure to their experience.
When talking to your loved one who has been diagnosed with cancer about their experience, I do not believe it is appropriate to speak as if you fully understand how they feel or what they are going through, even if you have experienced cancer or another serious illness yourself. The uniqueness and depth of your loved one's feelings and experience should be acknowledged and respected, and it is impossible to know exactly what your loved one's experience is like. I would also advise against saying things like "stay strong" or "you are so strong." Oftentimes, when cancer patients undergo treatment, they do not feel strong. And that is very okay; it is important for your loved one to feel as though it is okay and normal for them to not feel strong. Saying things like "stay strong" can also imply that a cancer patient has a level of control over their situation (whether that control is in how they feel, how they think, how they act, or how their cancer experience changes/progresses), when often, they may not.
Acts of service like cooking meals, giving your loved one treats, making things for them, writing for them, etc. can also be great ways to show your loved one how much you value and support them.
Hometown: McLean, VA
Age: 15
Connection to osteosarcoma: My uncle Scott was diagnosed and passed away from osteosarcoma. I was never able to meet him and throughout my life, I've heard stories from my dad and my grandparents.
What are you up to these days? Currently I am a runner and golfer year-round, working in high school, and hanging out with my family and friends.
Something most people don't know about you: I'm a huge Duke fan and love to watch their basketball games with my dog, also named Duke.
What advice would you give on how to best support a friend or family member who has been diagnosed with osteosarcoma? From the stories shared by my dad and grandparents, I've learned about their and Scott's experiences with osteosarcoma and what they did to support Scott during his treatment, surgery, and battle with cancer. From what I have learned, being present, empathetic, and spending quality time are some of the most important methods in supporting a loved one who's been diagnosed. I talked to my dad about his experiences and something that he pointed out which stood out to me was allowing them to go through their emotional process and being there for them as a teammate, sibling, or friend for them to rely on.
Hometown: Bella Vista, Arkansas
Age: 17
Diagnosed: 2020
Primary tumor location: Femur
Current status: NED
What are you up to these days? Hanging out with family, doing online school, and researching colleges.
Something most people don't know about you: I am the first pediatric patient in Arkansas to go home on a LVAD.
Advice for newly diagnosed osteosarcoma patients: Don’t be afraid to ask for help.
Hometown: Mequon, WI
Age: 21
Diagnosed: 2017
Primary tumor location: Humerus
Current status: NED
What are you up to these days? I am a junior at University of Wisconsin-Madison studying biomedical engineering in the hopes of continuing into med school one day. In academics, I am in a research lab studying spinal cord injuries and novel treatments for healing contusion sites. Similarly, I currently work with medical physicists and another undergraduate at UW Health to design a pelvic phantom to validate the use of an upright CT scanner for radiotherapy to treat prostate cancer. I have been on the design team for the last two semesters and look forward to progressing through the creation of the product in the future.
As an extracurricular, I am a project manager for the University of Wisconsin-Madison chapter of Engineers Without Borders, which focuses on providing basic needs to rural communities. There, I have worked on a project which provided access to clean water via a water pump and water tap system for a community of over 300 people. Currently, I am leading a project to implement a series of solar panels so the community can run their water pump any time of the day and still have enough electricity for lighting and other electrical needs.
Last summer at the MIB Conference in Atlanta, I had the pleasure of meeting a researcher from the Polytechnic University of Catalonia, who researches novel ways to treat Osteosarcoma. From this meeting, I was introduced to the PI of the lab and will be interning with her team in Barcelona this summer, where I will be working on creating tissue models to research treatment methods for osteosarcoma.
In my non-academic life, I enjoy running, reading, watching Formula 1, and learning about history!
Something most people don't know about you: I LOVE tea. In fact, I have over forty different varieties of tea which range from all over the world. Tea has truly become a passion of mine as it is an ancient beverage which has ingrained both its preparation and ingredients into a myriad of different cultures and eras. I have fallen in love with both the variety of tastes, preparation styles, and pairings with food that it can offer. One day, maybe soon, I hope to become a certified tea master!
Advice for newly diagnosed osteosarcoma patients: With the myriad of life altering, tremendously scary events that go on at diagnosis and throughout treatment, it is easy and typically often that you feel like everything is out of your control and the environment is controlling you, not the other way around. Something that you can control, however, is your appreciation and joy for life. It was quite easy for me to become passive during my treatment and go through the motions of my day, but I missed out on doing the things that make me happy. What made the good days so good was doing something I loved, whether it be watching my favorite basketball team play (Milwaukee Bucks) or watching a show with my family.
So overall, I would say to appreciate the joys of life in all of its small and large moments, whether it be a special event or just a little video that made you laugh. Appreciating life makes the difference between living and being alive.
Hometown: Melville, NY
Age: 19
Diagnosed: 2015
Primary tumor location: Femur
Current status: NED
What are you up to these days? I am an undergraduate student studying chemistry.
Something most people don't know about you: I love horror movies.
Advice for newly diagnosed osteosarcoma patients: Board games are a great way to pass time during treatment.
Hometown: Melville, NY
Age: 16
Connection to osteosarcoma: My brother was diagnosed with Osteosarcoma in his right femur when he was 10, he will now be 8 years in remission!
What are you up to these days? I just got hired as a counselor for Sunrise Day Camp Long Island! Other than that I do art, bake, and participate in school clubs. I also love taking care of my kitten Dallas!
Something most people don't know about you: I love movies and tv! Pop culture really interests me and I love all types of movies!
What advice would you give on how to best support a friend or family member who has been diagnosed with osteosarcoma? Try to remember to take care of yourself as well as your warrior, don’t focus on their illness when you are with them and try to do things you both love together!
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Hometown: Atlanta, GA
Age: 21
Diagnosed: 2022
Primary tumor location: Left distal femur
Current status: In treatment for lung metastases, currently stable
What are you up to these days? In my fourth year of college at Georgia Tech.
Something most people don't know about you: I went skydiving the day before freshman move-in in 2020!
Advice for newly diagnosed osteosarcoma patients: Give yourself grace and tell your friends what you need from them - this is an extremely difficult time and you will not be able to function the same in work, school, or a social setting during treatment. Take time to take care of yourself! Also, many times our friends don't know how to help us or talk to us about what we are going through. Telling them straight up can help them be more supportive of you. Also, stand up for yourself in your treatment! It can be hard to speak up about your needs to your doctors, but at the end of the day it is your health and your life and your team is there to help you.
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Hometown: Victorville, CA
Age: 21
Diagnosed: 2022
Primary tumor location: Right upper tibia
Current status: NED since May 2023
What are you up to these days? Just enjoying life while pursuing and prioritizing happiness. I plan on continuing to pursue my degree since I took a year off to focus on my health. This year my goal is to cross off a lot of things from my post cancer bucket list and spend as much time as I can with loved ones.
Something most people don't know about you: Pre-diagnosis I was very athletic. From a young age (around 5-6 years old) I took an interest in soccer and played club for a long time until I chose to focus on running. I started cross country and track in middle school and continued all throughout high school. My efforts earned me a full ride scholarship to a private institution in the Bay Area (NorCal) and I ran division 1 cross country up until my diagnosis.
Advice for newly diagnosed osteosarcoma patients: Try to take it all one step at a time, it can be very overwhelming and daunting especially at the beginning. It’s hard to not stress about the ‘what ifs’ but what helped me a lot was focusing on activities that kept my mind busy and brought me joy like journaling, coloring, and spending time with my family, friends and dog.
Hometown: Tampa, Florida
Age: 20
Diagnosed: 2020
Primary tumor location: Left tibia and fibula
Current status: In remission
What are you up to these days? Finishing my Music Education degree at Florida State University.
Something most people don't know about you: I’m a published composer, I published my first piece for TTBB Choir in September of 2023.
Advice for newly diagnosed osteosarcoma patients: Keep a positive mindset, and keep track of your achievements. Every little victory in this fight is something to be proud of.
Hometown: Chicago, IL
Age: 19
Diagnosed: 2016
Primary tumor location: Right femur
Current status: 6 years NED
What are you up to these days? I’m in college for vocal jazz performance.
Something most people don't know about you: I broke my arm when I was younger, I couldn’t play the violin anymore so I taught myself the cello so I could keep playing in the orchestra.
Advice for newly diagnosed osteosarcoma patients: Reach out to people in the Osteo community and create those connections. They are a great support system!
Hometown: Trumbull, CT
Age: 20
Diagnosed: 2019
Primary tumor location: Left scapula
Current status: NED
What are you up to these days? I am currently a junior at Tufts University studying biology and am applying to medical school, hoping to become a pediatric oncologist someday. Outside of school, I love running, baking, and listening to music.
Something most people don't know about you: One of my favorite types of artwork is mosaics. I love the unique textured look and the way many tiny pieces come together to make such detailed pictures. I even tried creating some myself during the pandemic and treatment.
Advice for newly diagnosed osteosarcoma patients: Take people up on the support they offer, and it is okay if some of the relationships in your life change. When people said things like "I'm here for you" and "let me know if you ever need anything," I often found it difficult to reach out because I was always worried about making them uncomfortable or changing our relationship, specifically with friends and others my age. Looking back, I think many of my friends also found it challenging to know how to support me. Ultimately, some people showed up more than others, and some were there even when I didn't ask, so many of my friendships did change, but that's okay. Reaching out for support or simply to hang out was a learning curve, but it made such a difference to feel a little more connected to the world outside my immediate family.
Hometown: Wayne, NJ
Age: 20
Diagnosed: 2021
Primary tumor location: Pelvis
Current status: NED
What are you up to these days? Student at Villanova University
Something most people don't know about you: I’m trying to learn fiddle music this year after years of classical violin.
Advice for newly diagnosed osteosarcoma patients: Find as monotonous of an activity you can when times are the worst (Tiktok, Diamond Painting, Sticker books, Color by number, documentary TV shows) it’ll help the time go by quicker.
Hometown: Verona, Kentucky
Age: 20
Diagnosed: 2018
Primary tumor location: Left proximal tibia
Current status: NED
What are you up to these days? I'm a junior at the University of Kentucky, majoring in Kinesiology with the intention to pursue a career in medicine.
Something most people don't know about you: I’m a prank war champion.
Advice for newly diagnosed osteosarcoma patients: Don’t look to the internet for all your questions.
