Vision
A world without the burden of Neurofibromatosis.
Mission
Our focus is to ease the burden and improve the health of those who suffer from Neurofibromatosis (NF) by pushing for life-altering discoveries through the funding of medical research, therapeutics, and treatments for NF-related diseases, with a special focus on Neurofibromatosis type 1 (NF1).
Joanna Ruth Bell Foundation Objectives
The Joanna Ruth Bell Foundation (JRBF) seeks to honor Joanna’s memory by advancing three objectives:
- Fund well-defined translational research into treatments and therapeutics for the neglected diseases related to Neurofibromatosis (NF), with a specific focus on Neurofibromatosis type 1 (NF1).
- Advocate for and connect NF1 patients and families across a global network and, where possible, link patients to the first objective.
- Utilize the first and second objectives to connect individuals who selflessly dedicate their lives to the greater good, embodying the spirit of Joanna.
Advancing NF1 Research Through Partnership and Innovation
The impact of NF1 and NF-related diseases is staggering, with mutations of the NF1 gene occurring at an approximate rate of 1 in 3,500 people worldwide. NF1 research is poorly funded and patients around the world have continued unmet need across pediatric and adult populations.
The Joanna Ruth Bell Foundation (JRBF) has a profound long-term goal: to establish a global network for NF1 research. This vision entails connecting with existing research institutions dedicated to studying NF1, forging new institutional support where possible, and fostering dialogue between influential global organizations and charitable entities committed to advancing NF1 treatments and therapeutics.
NF1, a surprisingly common multisystem disease that affects individuals regardless of ethnicity or gender, demands a new approach to therapeutic discovery. By advancing scientific knowledge surrounding this intricate disorder, JRBF seeks to cultivate novel therapeutic insights that can extend to other interconnected diseases. A cornerstone of the foundation’s strategy is to align this concept with interdisciplinary objectives in critical fields such as artificial intelligence, gene therapy, genomics, biomarker discovery, and drug development.
This is an exciting time for NF research, catalyzed by the Bell family’s announcement and the establishment of JRBF to further support NF-related research and outreach to patients. The foundation recognizes that progress necessitates placing NF research at the forefront of numerous world-leading academic and research institutions. An exemplary initiative is the recent creation of the Nick Gilbert Neurofibromatosis Research Institute, spearheaded by the Gilbert family. Such impactful endeavors should serve as models to be replicated globally, harnessing advanced techniques and clinical perspectives to drive forward a movement aimed at alleviating NF-related suffering.
JRBF’s global aim is to build an international network that strengthens existing research collaborations between the United States and the United Kingdom, with a focused emphasis on NF1. The foundation’s initial efforts will concentrate on offering 3-year postdoctoral research fellowships, with the ultimate aim of endowing a professorship at the prestigious University of Oxford, alongside establishing multiple endowed postdoctoral positions within the global network of NF research laboratories. Through these actions, the Joanna Ruth Bell Foundation aspires to expedite progress and enhance the quality of life for individuals affected by NF1 on a global scale.
Providing Grants to NF1 Research Partners
Postdoctoral research scientists play a pivotal role in the scientific community. They bring specialized expertise and fresh perspectives to research projects, often driving innovation and breakthroughs in their respective fields. Postdocs also contribute to the mentorship and training of the next generation of scientists, fostering a collaborative and dynamic research environment. Furthermore, their work supports principal investigators and research teams in advancing scientific knowledge and addressing complex research questions, making them indispensable contributors to the research ecosystem.
