Marlene Verno

Marlene Verno's Fundraiser

The ROS1ders Need More Research! image

The ROS1ders Need More Research!

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$75 towards $2,000

2024 Update: It is the ROS1 cancer yearly fundraising time and I wanted to give you an update on how I’m doing. It is because of ongoing research that I am living a full life. I was originally diagnosed in May 2021. In March 2023 I had been on a TKI medication for 11 months and unfortunately had progression to my brain. I was offered the last slot in a clinical trial medication called NVL520. I started the trial on April 16, 2023 and here I am October 2024 planning a wedding with my daughter Emily and watching my youngest Elizabeth begin her nursing career at Lenox Hill. A clinical trial does not happen without research and research does not happen without funding. There are so many types of cancer and sadly too many families are all too familiar with this.

Lung cancer in general does not get the funding research it should - add to it a rare gene mutation, and it creates an even smaller nucleus for funding.

The ROS1ders are raising money to support patient-partnered research into our own disease, and we could use your help. Our ongoing projects in need of support include The ROS1 Cancer Model project, the ROS1 Real World Data project, and ROS1+ cancer seed grants.

The ROS1 Cancer Model Project enables people who have ROS1+ cancer to donate live cancer cells to make models to accelerate research. Through our efforts since 2017, we have helped to double the number of available cell lines and those cell lines have been shared with research institutions in the U.S., Canada, and Europe.

Our most recent project focuses on Real-World Data, which will develop ways to collect data from patients to get more information about their experiences with treatments and side-effects. In May 2022 we hosted a roundtable featuring an international panel of clinicians, researchers, patients, and caregivers experienced in ROS1+ cancer. Our goal is to create an international ROS1+ cancer Real-World Data project.

In addition, in 2023 we funded two $75,000 seed grants for ROS1+ cancer research projects. Our goal for 2024 is to be able to fund three $75,000 seed grants. With your help, we're so excited to move forward and help those with ROS1+ cancer improve outcomes! Visit our website to learn more about the ROS1ders patient-partnered research at The ROS1ders Global Initiative.

Just a small donation will go a long way to helping me meet my goal for The ROS1ders, Inc. Thank you ❤️🙏🏻😊