Research and Funding Ideology
With a commitment to advancing scientific research and improving the lives of individuals affected by NF1, Penny's Flight focuses on funding and supporting innovative studies, collaborations, and therapies that will lead to the eradication of this debilitating condition. The organization's research and funding priorities are designed to address the diverse challenges posed by NF1 and accelerate progress towards finding a cure.
Penny’s Flight Foundation is driven by a vexing truth: NF1 is the most common genetic disorder globally and still has no cure.
There are several emerging values and areas of work in which we are most interested:
- Fundamental Research: Penny's Flight recognizes the importance of fundamental research in unraveling the complexities of NF1. By supporting investigations into the underlying mechanisms, pathogenesis, and genetic aspects of the disorder, the organization aims to deepen our understanding of NF1's progression and identify potential targets for therapeutic intervention. Research proposals that explore the role of the NF1 gene, its protein product neurofibromin, and their interactions with cellular pathways will receive priority.
- Immunotherapy: We seek to support researchers undertaking studies of the underlying biology of NF. This includes studying the genetic and cellular mechanisms that lead to tumor growth, as well as the role of the immune system and other factors in the development of the disease. Additionally, we seek to fund immunotherapy research, which involves using the body's immune system to attack and destroy cancer cells. Researchers are investigating the use of immunotherapy in the treatment of NF-associated tumors, and early results have been encouraging.
- Multidisciplinary Collaborations: Recognizing the complexity of NF1 and the need for diverse perspectives, Penny's Flight encourages multidisciplinary collaborations among scientists, clinicians, geneticists, and other experts. The organization seeks to foster partnerships between research institutions, universities, hospitals, and industry leaders to facilitate the exchange of knowledge, resources, and expertise. Collaborative research proposals that demonstrate a comprehensive approach to understanding and combating NF1 will receive special consideration for funding.
- Seeding Growth: Data shows that scientists who become exposed to NF research tend to stay in the field for the long haul. We are interested in seeding the growth of young investigators with bright minds and interest in the NF space early and have partnered with the Children's Tumor Foundation to support their "Young Investigators" Awards.
- Innovative Technologies: Penny's Flight acknowledges the potential of innovative technologies to revolutionize NF1 research and treatment. The organization encourages proposals that leverage cutting-edge technologies such as genomics, bioinformatics, imaging techniques, artificial intelligence, and data analytics to accelerate progress in understanding NF1's molecular basis, identifying biomarkers, and developing personalized treatment strategies.
- MEK Inhibitors: Another promising area of research involves targeting specific genes that are associated with NF. For example, researchers are studying drugs that can block the activity of a gene called MEK, which is often overactive in people with NF. By targeting this gene, researchers hope to slow or stop the growth of tumors and improve symptoms.
In addition to our scientific agenda, PFF is interested in supporting projects that improve the management of NF symptoms. This includes developing new drugs to treat pain, improving physical therapy and rehabilitation programs, and developing new assistive technologies to help people with NF live more independently. Tied to this priority, Hospital for Special Surgery (HSS) recently launched "The Penny Doerge Adaptive Academy", a program allowing individuals with acute physical challenges to participate in a wide variety of sports and activities.
Finally, the Foundation is bolstered by the love and support of an Advisory Board of nine of Penny’s dearest friends. As they actively work to sew Penny’s joy and light into events, communications and lives, they will be responsible for a small annual grant budget to award to a project or person whose work exemplifies Penny’s promise.