The Children’s Tumor Foundation was proud to host a group of patients and families affected by NF for a close-up view of the groundbreaking research happening at Cincinnati Children’s Hospital. Thanks to the hospitality of Nancy Ratner, PhD, and Elliott Robinson, MD, PhD, six patient representatives from CTF Engage and two local members of the NF community were given the opportunity to tour two NF research labs.
The day began with introductions and presentations from Dr. Ratner and Dr. Robinson to provide an overview of their work at Cincinnati Children’s Hospital. The group was then given a behind-the-scenes tour of their labs, where we heard from Avery Volz, a student in the Robinson Lab, and Robert Hennigan, PhD, an institute investigator in the Ratner Lab. This allowed everyone to learn about and interact with much of the high-tech equipment researchers are using to better understand NF.
The group reconvened to hear presentations from Jay Pundavela, PhD, Associate Staff Scientist in the Ratner Lab, Dr. Robinson, and Dr. Hennigan. Presentations focused on how their early-stage basic research might one day lead to clinical applications for those living with NF. After lunch, we were treated to three poster presentations from Niousha Ahmari, PhD, Research Fellow in the Ratner Lab, Kassidy Grover, PhD student in the Neuroscience Graduate Program at UC, and Avery Volz, PhD student at CCHMC in the Development, Stem Cells, & Regenerative Medicine Graduate Program.
WORDS FROM THESE NF RESEARCHERS
Kassidy Grover: “Our lab is interested in investigating the cognitive problems seen in children with NF1, including ADHD and sensory processing problems. We use mouse models of NF1 and other Rasopathies to determine the brain areas responsible for these problems in the hopes of finding future therapies for patients. 
Avery Volz: “This project aims to find another treatment option for NF1 patients to treat plexiform neurofibromas. We hope that creating a gene therapy treatment will have long-term effects and prevent side effects patients may experience with medications.”
Niousha Ahmari, PhD: “Our research focuses on improving the response of NF1-associated tumors to MEK/ERK inhibitors by integrating their effects not only on the tumor microenvironment but also on physiological systems. We have discovered that the time at which a treatment is given can dramatically change how tumors respond. By characterizing these influences, we aim to deliver more precise treatments that harness the body’s own natural rhythms to improve therapeutic outcomes.”
Elliott Robinson, MD, PhD: “I really enjoyed the lab tour. The families were really curious about the tools and technologies we use in the lab and asked many good questions about the scientific process. I think it helped the NF families appreciate the time and effort that goes into the development of new treatments . . . While NF families frequently see caregivers and clinicians at Cincinnati Children’s, they rarely get opportunities to interact with researchers in a laboratory setting. I hope that hosting this event will increase public awareness about the importance of basic and translational research, as well as help scientists identify ways in which their research could better meet the needs of our Rasopathy patients.
NAMES OF ATTENDEES
Jessica Samblanet
Judy Hall
Michael Peper
Micki Cole
Caitlin & Theo Ottesen
Matt & Stephanie Reeve
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