Alivia Hill - Her Story with NF

My name is Alivia Hill. I am twenty-one years old and currently a junior at Indiana University in Bloomington. I am from Greenwood, Indiana, and I have five siblings in total: three sisters and one brother. My youngest sister Harper was diagnosed with Neurofibromatosis (NF) when she was only thirteen months old. She started experiencing different problems when she was just a tiny baby. For example, her little belly would swell up like a big balloon, but no one could seem to figure out what was going on. It took the entire thirteen months, multiple different tests, and multiple different doctors and specialists to diagnose her condition. Since her diagnosis, she has continued to see her doctors and specialists and does physical therapy. Harper is now seven years old and thriving! 

I got involved with the Penny’s Flight Foundation (PFF) in April of 2023. My mom and I started following their social media accounts and were hooked! Penny reminded my mom and I so much of our sweet Harper. Just like Penny, Harper doesn’t let NF define her. They both exude kindness, humor, and determination. I reached out to Kate Doerge in August of 2024 about starting a chapter of the PFF at Indiana University, and the rest was history. Kate and the entire PFF administration have been nothing short of amazing. They have opened the doors for me to make an impact in the NF community and be an advocate for those battling this disorder.

As the president of my chapter, I have gotten to plan multiple events to raise money and awareness for Penny’s Flight Foundation and NF research. We have hosted several “dine and donate” events, a Pedal for Penny cycling class, and even made cards for NF warriors at Riley Hospital for Children in Indianapolis. Additionally, I have educated others on campus about Neurofibromatosis and its side effects. I truly believe that raising awareness is the first step in creating change within our community.

In October of 2024, I received a call from Kate inviting me to join her and the NF Network in Washington D.C. to lobby and advocate for those with NF in Congress. I flew to D.C. on February 1st of 2025 and got to spend three days meeting with different congressional representatives, teaching them about NF and the importance of funding NF research. Those three days have ultimately changed my life for the better. Having the opportunity to use my voice and fight for change within our country was incredibly empowering. I have been inspired to carry this power and determination with me back to my college campus and continue to be an advocate for Neurofibromatosis. 

The Penny’s Flight Foundation has created incredible momentum for NF research and advocacy. NF is one of the most common rare genetic disorders, but most people have never heard of it. Through the efforts of PFF, we are changing that by raising awareness and funds to support research and provide hope for those affected by NF

Alivia plans to come to Fam Jam this summer on June 28th💗🦋