Lilly Ann was diagnosed with neurofibromatosis type 1 when she was 18 months old and has tumors on her spine, neck, chest, and upper right arm. She also suffers from severe scoliosis because of NF. But that has never stopped Lilly Ann.
Since June 2016, Lilly Ann has been taking the MEK inhibitor selumetinib (Koselugo) as part of the clinical trial which brought this first drug for NF to market, and has seen a 20% reduction in the size of her tumors.
Now nearly 20 years old, Lilly Ann is a sophomore at the University of Alabama where she is also a proud Alpha Delta Pi sorority member. Lilly Ann has made multiple media appearances due to her involvement with Cupid’s Undie Run, NF Walks, Racing4Research, and NF Forums, beautifully sharing information about neurofibromatosis with the world alongside her supportive family.
On Monday, November 16, during the virtual Children’s Tumor Foundation National Celebration Concert to End NF, Lilly Ann will be honored as the 2021 NF Ambassador. This award is bestowed upon an individual with NF to recognize their courage living with the disorder, their personal efforts to further the Foundation goals of research, public awareness, and patient support. We asked Lilly Ann to tell us more about her journey.
How did you first learn about your diagnosis?
Since I was diagnosed [with NF1] at 18 months old there really wasn’t a first time I learned about it. My parents chose to never keep that from me and I’m very grateful for that! They always told me I wasn’t defined by my diagnosis and I could become and do whatever I put my mind to.
How does living with NF impact your life?
I do everything I can to not let NF impact my life. But there are some limitations because of it. I can’t walk long distances without pain and it has caused me to have such severe scoliosis that it’s quite visible from the outside. But despite those things, NF has little effect on my outlook and what I choose to do in my life. As hard as it is to believe, there are days I forget about it. I still go to college, participate in clubs, I’m active in a sorority, hang out with friends, travel, and my favorite: go to Disney World! NF has never stopped my ambitious attitude and I have big plans for my future!
What’s the most difficult obstacle you’ve faced? How did you overcome it?
I would say my most difficult obstacle would be my scoliosis. It’s the scoliosis that causes me back pain when walking long distances and standing for extended periods of time. It also causes me to look physically different. No one wants to look different from everyone else and it can be challenging at times. But I know that I am still beautiful and anyone who judges me for how my back looks isn’t worth my time anyway.
What’s the best piece of advice you’ve ever gotten?
Never give up. I don’t remember who instilled this in me but it’s something I live by every day. There are those who could hear “there’s no cure” and throw in the towel and live in grief and sadness and have a pity party the rest of their lives. For me it’s motivation to work hard to find a cure and until there is one, I see no reason to curl up and never live my life happily. I live every day to the fullest and do everything I can do to make my life great.
Why did you get involved with Cupid’s Undie Run?
I got involved because my dad got involved. He started it in Orlando when I was in middle school so at first I thought it was really weird that my dad would be promoting running around in underwear! But as I got older I saw how fun the event was and I really enjoyed promoting it and doing media appearances for it!
What do you enjoy about the event? Favorite memory?
My favorite part is probably all the media interviews! Especially Fox 35 TV and IHeartRadio who have been amazing partners with us from the start! I have met local celebrities and we have reached so many people who had never heard of NF! It is how I realized I want to study communications in college.
What other CTF-related events have you participated in?
When we were first diagnosed, my dad built a lemonade stand that we used a lot at garage sales and other times. And we’ve been to many CTF events from walks, to forums, to galas. But one that sticks out for me was Racing for Research! The Rolex 24 Hours at Daytona was amazing and it was so fun to meet the drivers, watch the race, and meet other NF families. Because we lived in Orlando, I was the first NF Hero to be part of that event! It definitely holds some of my favorite memories with the Foundation because so many kids came to it each year and I made friends I still stay in touch with today.
In 2016, you joined the selumetinib clinical trial, and have since had your tumor shrink 20%. What’s it like to be a part of the history-making first FDA-approved drug treatment for NF?
It’s amazing. I couldn’t be more thankful to be a part of this trial. I don’t know where I would be or if I would be able to do the things I do today without this medication. When I first heard the word shrinkage I could not hold back my tears of joy.
After graduating from the University of Alabama, what do you want to do when you grow up?
Upon graduating, I want to work in public relations for the Walt Disney Company, specifically in Walt Disney World or Disney Cruise Line! It would be the perfect job for me because I would get to use my love for Disney daily in my career.
How did you feel when you found out you were the 2021 NF Ambassador?
I was shocked. I didn’t expect it and when I received the call I was totally surprised and honored. I’m so excited to serve as ambassador for this year to come because it will give me a chance to give back to the Foundation that has done so much for me and the 2.5 million others living with NF.
As NF Ambassador, what are you looking forward to most? What are you hoping to bring to the NF community?
While this year will be different, my main goal is to be an example that your life does not have to be defined by your diagnosis. Despite having NF, you can still have a great life, make a positive impact and accomplish anything! I hope that I can bring this perspective to people who need to hear it!
What’s Covid been like for you?
Covid has been interesting, to say the least. I don’t mind online classes but, like any college student I want to be on my campus enjoying college and sorority life, especially Alabama football! Roll Tide! I enjoy being home with my high school friends and family because I love home, but I do miss college! This semester, I made the hard decision to stay home because it was too much of a risk for me to return to campus. But I’ve been very lucky to not be directly affected by the virus.
Is there anything else you want to add?
I would just like to say thank you to all of the researchers out there who are choosing to help us find a cure and a treatment. Without them, we’d all be up a creek without a paddle. The advancements of the past five years have been amazing, and I know we are getting closer. I also want to thank the CTF Ambassadors and honorees before me, and I really look forward to serving with Jack Burke who I first met at Racing for Research. Together, we can all use our platforms to spread awareness and help raise funding for more research. I truly believe we can and will End NF soon.
