Summer of 2025 has been nothing short of extraordinary for Penny’s Flight.
Thanks to an outpouring of generosity and growing awareness, we’ve not only raised critical funds for NF1 research—we’ve also welcomed a wave of new supporters into our community. Every donation, every shared story, and every voice raised has helped move us one step closer to #ENDNF.
Right now, private funding is the engine driving NF1 research forward, and your support is making a direct impact where it matters most. Because of the incredible momentum this summer, the Penny’s Flight team has been able to further evaluate promising research proposals for funding in 2025. This brings new hope to families affected by NF1.
The amazing Courtney Janssen, spearheaded the connection of the Blackstone Charitable Foundation with Penny’s Flight. During their employee-driven BX Gives Back Challenge, they awarded Penny’s Flight with an incredible $125,000. This money has the ability to change the lives of NF1 patients and will fund more research, getting us so much closer to finding a cure.
We sat down with Courtney this summer to learn more about how she got connected with Penny's Flight.
Can you tell us a little bit about your daughter and when she was diagnosed with NF1?
Maeve is the youngest of our 3 kids, turning 4 in a week. She is full of life and has an incredible sense of humor, constantly finding the joy in everything. In fact, all her teachers comment on how she is friends with everyone and brings the class together. She truly made our family complete!
At Maeve’s one year wellness check, the pediatrician noticed 6 café au lait spots and recommended we make an appointment to meet with the NF1 clinic at Children’s National Hospital in DC. We did the genetic testing and received the formal diagnosis that she had NF1.
What were your first thoughts or emotions when you received the diagnosis?
When we received the news that Maeve had NF1, our initial feelings were shock and fear. We had never heard of NF1, we had never met anyone impacted by NF1, and when talking to the doctor, it seemed that there was a wide range of how NF1 presents in individuals. Facing the unknown was quite scary.
How did you first hear about Penny’s Flight Foundation?
Shortly before Thanksgiving of 2024, I received an invitation from J. McLaughlin to attend an in-store shopping event to raise funds and awareness for Penny's Flight. I was so surprised to see NF mentioned in a marketing email. I immediately went to Instagram and searched for Penny’s Flight. The site projected feelings of gratitude and positivity in the face of challenge. It was a message I wanted to find and a feeling I so desperately needed to find. I sent Kate a message wanting to know how she had the strength and courage to turn her pain into purpose. She wrote me back such an honest, caring message and made herself available to me.
What did it mean to you to meet other families affected by NF1?
Community is so important, especially when it comes to NF. Having the ability to grow our community has been rewarding whether it is finding the best doctors, resources, or just being able to connect with people who can relate to what you are going through.
What’s one thing you’ve learned through this journey?
In the 3 years that we have been on this journey, what has become most apparent to me is that awareness of NF is critical. It is critical for those parents who are at the pediatrician receiving the diagnosis, it is critical for the people living with NF and navigating this journey, and it is critical to change the course of this disorder.
What inspired you to bring Penny’s Flight to the Blackstone give back event?
Since Maeve’s diagnosis, I wanted to find a way to help. I wasn’t sure what that looked like or where to start. When the annual Blackstone Gives Back Challenge came about, Penny’s flight immediately came to mind. The Blackstone Gives Back Challenge awards grant money to the foundations represented by the top 3 teams. This was a way that I could be part of raising much needed awareness and funding for NF1. Prior to this contest, I wasn’t very open about Maeve’s diagnosis. Over time, I have come to realize that there is power in being open about our journey with NF1 and we can make a meaningful difference in the lives of those impacted by NF. Kate, Chad, and Julie at Penny’s Flight were so wonderful to work with on this challenge. They truly live and breath positivity and are laser focused on broadening awareness for NF. It was a no brainer to represent them in the contest!
Your biggest hope for the future?
When I think about the future there are two main goals that I am hopeful of:
1) Growing awareness of NF to the point that it becomes mainstream along the lines of breast cancer, ALS, etc. The more awareness that we build, the more fundraising we can achieve to ultimately make greater advancements in medical research.
2) Through medical research we can give greater clarity to how NF will present for patients, develop treatments to mitigate the impact of the disorder, and ultimately find a cure.
To know that this could come to fruition over Maeve’s lifetime because of organizations like Penny’s Flight is amazing!
Seeing an opportunity with the Blackstone Gives Back Challenge, Courtney was able to bring to light Penny's Flight's mission. Check out more on their article!
Read more about the Blackstone Gives Back Challenge here.