Family Funds

Showcasing the incredible efforts of families who have come together to support the fight against NF.

What is a family fund?

A family fund is a dedicated fundraising initiative established by families to support a cause close to their hearts, in this case, the fight against NF. These funds are created to honor loved ones affected by NF and channel resources into research, awareness, and support to improve the lives of those living with neurofibromatosis and all types of schwannomatosis.

Each fund represents a unique journey of hope, resilience, and community spirit, highlighting the power of collective action in raising awareness and funds for vital research to end NF.

How do I start a family fund?

Creating a family fund allows you to invite friends, family, and colleagues to join your efforts to move the work of the Children’s Tumor Foundation forward. Click the button below to get started. If you have questions, email us at donorrelations@ctf.org.

Get Started

A family of five sits on a picnic blanket outdoors. The parents and one child wear shirts that say "I Know A Fighter;" the other two children wear shirts that say "Children's Tumor Foundation.

Lauren's Story

Lauren’s story begins following a car accident in 2019 that necessitated life-saving spinal surgery where doctors made a startling discovery – tumors were silently growing along her spine. For years, she lived with the uncertainty of her condition until another twist occurred, later uncovering more news – a gradual loss of hearing.

Upon undergoing an MRI to understand the hearing issues, a life-altering revelation was made – tumors on her brain. Her diagnosis was neurofibromatosis type 2 (NF2), now known as NF2-related schwannomatosis (NF2-SWN). A revelation that turned Lauren and her family’s world upside down. With her passion for music, this diagnosis was especially cruel, as she hears the melodies she adores slip away by the day.

Lauren’s family and friends are rallying around her to join her in the battle against NF2-SWN.

What inspired you to start a CTF Family Fund?

NF in general is lacking in research, but we started it for specifically for NF2-related schwannomatosis. When I got diagnosed, all of these questions pertaining to NF2-related schwannomatosis started racking my brain, “What role does NF2-SWN have in nervous and mental health disorders? Is it common to experience tremors?” With the CTF Family Fund, we can raise money to go directly towards that kind of research, as well as treatment.

Why is CTF important to you?

When I got diagnosed with NF2-related schwannomatois, we had to travel a bit for an NF specialist. If I ever desire to move to a different state, I have to be careful where because it must have an NF2-SWN specialty clinic. Even though I am lucky enough to live in California where we do have NF specialists, there still aren’t very many. There aren’t many doctors specializing in NF because it’s not widely known — I had no idea what it was. CTF is a whole foundation for NF!! I am so grateful that the Children’s Tumor Foundation works exceptionally hard to raise awareness for NF1, NF2-SWN, and SWN so more people can actually know about this disease and in turn, we can create more doctors.

What do you hope to achieve with your Family Fund?

When I heard that the research funding for NF through the Congressionally Directed Medical Research Program (CDMRP) had been eliminated, I felt a deep grief and anger. I hope that our family fund can massively help CTF’s research funding. I really do. Please, for the 12,000 estimated Americans with NF2-related schwannomatois, and the 1 million estimated with NF1, donate. We need and appreciate all the help we can get to end NF!