Understanding and Combating Neurofibromatosis: Insights from the Children’s Tumor Foundation (Good2Give Podcast, Episode 14)
This episode of the Good2Give Podcast, hosted by Maria Walden and DePriest Waddy of the Community Foundation for Northeast Georgia, features guests Kate Kelts, Senior Manager of Patient Education and Engagement, from the Children’s Tumor Foundation, and Mark Oppenheimer, CEO of Modern Executive Solutions and a board member of the foundation. The discussion delves into the mission and efforts of the Children’s Tumor Foundation in researching and combating neurofibromatosis (NF), a genetic condition that causes tumors to grow on nerves. Kate shares her professional journey and her current roles, including leading the NF registry and planning patient engagement programs. Mark opens up about his personal connection to NF through his daughter, Riley, and the emotional and practical challenges faced by families dealing with the condition. The show highlights the importance of community, the impact of NF research on broader medical advancements, and the urgent need for funding clinical trials and treatments. The Community Foundation for Northeast Georgia’s role in supporting these initiatives and an urgent call to action for donations and support are emphasized throughout the episode.
To contribute to the Children’s Tumor Foundation, follow this link.
The Good2Give Podcast is presented by the Community Foundation for Northeast Georgia. The show is produced by John Ray and the North Fulton affiliate of Business RadioX®. You can find the full archive of shows by following this link.
Children’s Tumor Foundation
NF refers to genetic conditions that cause tumors to grow on nerves throughout the body. NF includes all forms of neurofibromatosis and schwannomatosis and affects about 4 million people worldwide. Anyone can be born with NF, and it affects everyone differently. There is no cure yet.
The Children’s Tumor Foundation is the drug discovery engine for NF. By bringing together patients, doctors, scientists, and pharma, we drive treatments, advance care, and deliver faster results for millions affected by neurofibromatosis or schwannomatosis. Their patient-first collaborative approach accelerates drug development and brings life-changing therapies to patients faster—driven by their mission to end NF.
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Kate Kelts, RN, BSN, Senior Manager of Patient Education & Engagement, Children’s Tumor Foundation
Kate Kelts is a registered nurse and the Senior Manager of Patient Education & Engagement at the Children’s Tumor Foundation (CTF). With extensive experience as a pediatric nurse, Kate spent many years providing care to acutely ill children in hospital settings before transitioning to a role as Clinic Coordinator in the Neurology Department at Children’s Hospital of Los Angeles (CHLA). It was there that she first encountered families affected by Neurofibromatosis (NF) Type 1, NF2-related Schwannomatosis, and Schwannomatosis.
Driven by a passion for supporting patients and their families, Kate joined CTF in 2015 as a Patient Support Coordinator. Since then, her role has evolved significantly, but her commitment to providing education, support, and advocacy for families living with NF has remained central to her work.
As Senior Manager of Patient Education & Engagement, Kate oversees key initiatives such as the NF Summit, the largest annual gathering of patients and families affected by NF. She also leads CTF Engage, a patient representative training program that empowers individuals living with NF to actively engage in research by prioritizing their voices and lived experiences. Additionally, Kate serves as Principal Investigator for the NF Registry, the world’s largest patient-reported database for individuals with any form of NF.
Kate’s dedication to advancing patient education, support, and research in the NF community continues to drive her work at the Children’s Tumor Foundation, where she remains focused on making a meaningful impact in the lives of those affected by these rare genetic conditions.
Mark Oppenheimer, Modern Executive Solutions
Mark Oppenheimer is a Board Member of the Children’s Tumor Foundation.
Mark is also the CEO of Modern Executive Solutions. He has 15 years experience building and leading innovative global search firms.
Prior to Modern, Mark was CEO Americas for Marlin Hawk Executive Search. From 2010 to 2018, Mark helped lead the company from 5 to circa 80 employees and grew revenues from $800K to $32M. During this time he innovated a new set of service lines and digital products while founding and growing the US entity to consist of over 70 blue-chip clients. In 2019, Mark sold out and began a new mission with his wife, Michelle Domanico.
He received a 1st Class Honor in Economics from the University of Nottingham (2005). Mark has dedicated a lot of time to New York Cares and the Board of both Big Brother/Big Sister US and Lucky Dog Animal Rescue.
Taking care of employees is Mark’s number one driver in business and taking care of his family and the community is his number one goal in life. His ambition is to build Modern from the inside out, with a culture of equality, care and teamwork. Modern supports diverse leadership teams & charities while significantly upskilling the experience of the executive solutions industry.
Topics Discussed in this Episode
00:00 Introduction to the Good2Give Podcast
00:38 Meet the Guests: Kate Kelts and Mark Oppenheimer
01:27 Understanding the Children’s Tumor Foundation
05:24 Mark Oppenheimer’s Personal Story
18:55 Daily Life with NF: Mark’s Perspective
28:10 The Role of the Community Foundation for Northeast Georgia
32:05 Call to Action: How You Can Help
36:47 Conclusion and Contact Information
The Good2Give Podcast celebrates the work of donors, nonprofits, and the causes they care about. DePriest Waddy and Maria Walden are the show’s hosts, and the Community Foundation for Northeast Georgia is the presenting sponsor.
The Good2Give Podcast is produced by John Ray and the North Fulton studio of Business RadioX®. You can find the full archive of shows by following this link. You can also find the show on all the major podcast apps, including Apple Podcasts, Spotify, and many others.
At the Community Foundation for Northeast Georgia, everything they do centers around one purpose: improving the world through the power of philanthropy.
On a fundamental level, they do that through managing funds held in trust, donated by individuals, organizations, and businesses. Most funds are donor-advised funds, similar to savings accounts. These funds are pooled for investment purposes, and their income is used to make grants for a wide variety of charitable purposes.
But the Foundation’s goals extend far beyond managing funds. They desire to strengthen the communities they serve in Gwinnett, Northeast Georgia, and beyond by providing leadership, addressing community needs, and assisting individuals and organizations with their charitable giving.
Connect with CFNEG:
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