Advancing Knowledge in the NF Community: A Year of Insightful Meetings

Author: NF Network

Published On: 10/03/25

What an incredible year of educational meetings we’ve had, all made possible by our outstanding network of medical professionals, local event chairs, and Alexion! We kicked off the year with a dynamic virtual meeting that showcased the innovative approaches to creative therapies for neurofibromatosis (NF), featuring insights from Dr. Chenue Abongwa and Erin Moore, a talented music therapist.

Our subsequent meetings highlighted the critical importance of clinical trials and how to make them more accessible. We were privileged to hear from Dr. Paul Moots, a leader in the field, along with NF researcher Dr. Vanessa Merker, and Dr. Thomas Wilson, who shared groundbreaking research on pain identification in individuals with Neurofibromatosis/Schwannomatosis, backed by our Project Dream grant.

We also held a transformative in-person educational meeting in Georgia, focusing on family planning and preimplantation testing, led by Dr. John Henson. The event offered valuable presentations, including one by Dr. Rebecca Brown on NF-related skin bumps, creating not just a learning experience but a close-knit community gathering for those affected by NF.

Our journey continues as we prepare to unite the community in Memphis for an inspiring discussion on navigating NF, starting with insights from the beloved local doctor, Eniko Pivnick.

We are excited to host Dr. Donald Bearden, who will present on "The Brains Behind the Diagnosis: Cognitive and Emotional Development in Children with NF1." He will address the challenges faced by children with neurofibromatosis type 1 (NF1) beyond the physical manifestations, shedding light on cognitive deficits and emotional difficulties. Drawing from his vast experience, Dr. Bearden will empower families, clinicians, and educators with knowledge and strategies to support resilience and success in these remarkable children.

We will also welcome back Dr. Moots, who will inspire us with a discussion on clinical trials and the ways we can contribute from home to shape the future of neurofibromatosis. With over three decades of experience, Dr. Moots has been a guiding force in the field, participating in numerous clinical trials that pave the way for advancements in treatment.

Our informative event will conclude with a presentation on "Productive Conversations with Healthcare Providers," led by Mike Sager, Patient Education Manager at Alexion, providing practical advice to empower all in attendance.

To join us on this inspiring journey, register at http://weblink.donorperfect.com/navigatenfmemphis. And, don't forget to register for our 15th Annual #NFSTRONG Walk the following day. Register here.

Stay tuned for two more exciting educational events to be announced soon!

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