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Research Receptions to End NF

By April 27, 2023December 4th, 2023Advocacy, Awareness

Over the last year, the Children’s Tumor Foundation has traveled across the country, hosting research receptions in local communities to introduce donors and volunteers – investors in our mission – to CTF-funded researchers. During these inspiring events, donors hear directly from researchers about the impact their dollars are making on NF research and raise mission-critical funds to drive forward our vision of ending NF.

Over the last six months, CTF hosted research receptions in Boston, MA, Los Angeles, CA, Charleston, SC, and Chicago, IL.

The first of these successful events was held October 22, 2022, when the Boston NF community came together for a Research Reception at Season's 52 in Chestnut Hill, MA. The reception was hosted by Shannon Chandley, CTF former Board Member Mady Donoff, Leslie Kates, and CTF Board Member Richard Soll. The evening included mingling, cocktails, and a panel discussion with NF experts led by CTF's then Chief Scientific Officer, Salvo la Rosa. Companies and researchers participating in the panel discussion included NF2 Therapeutics CEO Michael Wootten and James Walker, PhD from Mass General Research Institute. They discussed CTF's investment in gene therapy for NF2 and NF1 and share what that investment has meant to them. More than $330,000 was pledged that night toward NF research. A special thanks to Leslie and Dick Kates, Mady Donoff, and Shannon Chandley, all of whom increased their long-term commitment to the Foundation that evening.

Pictured above, from left at the Boston Research Reception: Michele Przypyszny, Barbara Gallagher, Leslie Kates, Nick Folk, Dick Kates, and Kim Robinson 

In January 2023, CTF hosted an NF meet-and-greet at the home of former Board Member and NF2 advocates Tara and Dave Skirzenski, who co-hosted the event with Kristy and Ryan Nobles. who are NF1 parents and active with Cupid's Undie Run. The event brought together more than 30 people to hear from CTF-funded researcher Steven L. Carroll, MD, from the Medical University of South Carolina, and the Foundation’s former Board Chair, Tracy Galloway. 

Pictured at right, from left, at the South Carolina Research Reception: Suzanne Earle, Connie Sorman, Tracy Galloway, Tara Skirzenski, and Kristy Nobles

Also in January, just before the annual NF2 and Schwannomatosis State of the Art meeting, CTF hosted a lab tour for our investors in the Los Angeles, CA area at the UCLA lab of CTF-funded researcher Marco Giovannini, PhD. He and his fellow lab members spoke to those attending about their research and why they were drawn to the NF field. The discussion was followed by a tour of the lab – where it all happens! Special thanks to these researchers, which included Jérémie Vitte, PhD, Leia Nghiemphu, MD, and Brian Na, MD. Thanks also to Shlip Shaw, an undergrad engineering student researching NF in honor of his brother who has NF1. Three groups of donors experienced the lab tour and talked to the researchers working on bench-to-bedside projects in NF1 and NF2. Special thanks to Marco Giovannini, PhD, and P. Leia Nghiemphu, MD, Director of the NF Clinic at UCLA, for opening up their space to CTF, and to Board Member Steve McKenzie and his wife, Alyson, for attending that evening.

Finally, on March 2, CTF hosted yet another successful event at Carlucci’s Rosemont in the Chicago-land area, co-hosted by CTF volunteers and Shine a Light Walk co-chairs, Kristin Meek and Staci Raymond along with Bob Listernick, MD, a pediatric neurologist and the NF Clinic Director at Lurie’s Children’s Hospital at Northwestern. The event brought together more than 30 of our local supporters who heard from a panel of CTF-funded researchers, including Bonnie Klein-Tasman, PhD, of the University of Wisconsin – Milwaukee; Carlos Prada, MD, of Lurie’s Children’s Hospital; and Jim Tonsgard, MD, of the University of Chicago. Each spoke of their research in NF, from behavioral research to using AI to better determine biomarkers to studying pain in NF1 and new possible treatments for NF2. 

The Foundation hopes to host many more research receptions in the coming months throughout the country to bring our CTF-funded researchers to our investors and to raise funds toward our mission to end NF.

If you would like to work with the Foundation’s Donor Relations team to host a research reception in your community, please email

Boston Research Reception