CTF’s NF Conference & Forum took place in San Francisco in September 2019. Amy Boulas, Cupid’s Charity Executive Director, was able to attend a couple days to support CTF as well as the NF Families who attended.
Wow, day one was amazing! I met so many great CTF volunteers and staff. Everyone is so passionate and committed to ending NF.
While there was no shortage of great moments, one highlight was hearing how committed CTF is to ensuring the patient perspective is considered when directing research efforts and funding. It was powerful to hear how much importance is placed on what matters most to people living with NF. For example, researchers were planning to focus on shrinking schwannomas in people living with schwannomatosis. However, patients said they didn’t care about shrinking the tumors, they just wanted an end to their severe pain. This changed the trajectory of the research.
Another highlight was the patient poster presentations. People living with NF as well as parents with kids with NF made posters to share their stories and challenges. I was touched by their positivity and candor.
All of this came after hearing about CT’s goal of raising $20M by 2025. I know they can do it! And I know that we will help them.
I can’t wait for day 2!
Day two of the conference was broken out into educational tracks specific to NF1 and NF2 as well as schwannomatosis. Much of the day focused on issues specific to each NF type and were geared to patients and families, covering a host of topics like issues at school, transitioning to adulthood, alternative medicine/therapies. It was impactful to listen to people sharing their experiences and learning together.
At one point, we came together to listen to a phenomenal panel explain the complexities of developing new drug therapies and the process of going from the lab to clinical trials to the patient population. The panel included several clinicians, a patient and a bio tech funder. As we are focused on research at Cupid’s, it was great to see various disciplines partnering to improve the process of delivering much-needed, life-changing therapies.
Throughout the day, the theme of patient engagement was heard over and over. The commitment to ensuring that research efforts and expenditures represent what is most important to people living with NF is absolutely at the forefront of everything CTF is doing.
While both days have been terrific, I think my favorite moment today was hearing stories of resilience shared by two young adults and a very special NF mom. All of our work at Cupid’s and the resulting funding is making a difference. But hearing how people face the continuing challenges of NF with strength, grace and their “NF family” was a high point.
It’s my last day at the CTF NF Forum but the first full day of the Scientific Conference. This meeting is bringing together over 400 doctors, scientists and clinicians from around the world to share information and progress on their NF research projects.
I am not ashamed to admit that the presentations I had the privilege of hearing were a bit difficult to follow. The presentations were developed by scientists for scientists; I am not a scientist.
That said, I heard some very cool things about combination therapy. How combining two therapies is far more efficacious than one. (One of the pics shows a row of tumors, two rows show tumors treated with one therapy, and the bottom row shows the combined therapy.) I also heard how one researcher worked to make the tumor more permeable before treatment so that it would be more susceptible to the drug thus creating greater efficacy.
While I was only able to be part of a small portion of this conference, I left feeling incredibly hopeful. Hope for all the people living with NF, their parents and caregivers that I had just spent the last two days with, as well as so many others that we know and love. Actually hearing these brilliant people talk about how they are shrinking tumors, ensuring medications and their delivery are as effective as possible, exploring the “cellular microenvironment” in which NF thrives so they can ensure it doesn’t, I can’t help but believe that life-changing therapies are coming and a cure is somewhere on the not-too-distant horizon.
I enjoyed many things about my time at this important gathering but I think my biggest takeaway is immense gratitude and hope that with so many brilliant minds around the world making NF their life’s work we will end NF in our lifetime.