Children's Tumor Foundation

Salvatore La Rosa at Rare Disease Day at NIH 2018 (wide crop)

Children's Tumor Foundation (CTF) is a non-profit organization dedicated to advancing research, raising awareness, and providing support for individuals and families affected by neurofibromatosis (NF). Neurofibromatosis is a set of complex genetic disorders that cause tumors to grow along various types of nerves and can affect the development of non-nervous tissues such as bones and skin. The foundation plays a pivotal role in driving research, fostering community, and serving as a beacon of hope for those impacted by NF.

History

The Children's Tumor Foundation was established in 1978 with the primary goal of finding effective treatments for neurofibromatosis. Since its inception, CTF has grown into a leading global organization, funding and facilitating critical research that aims to discover new treatments and ultimately a cure for NF. The foundation's efforts have significantly contributed to the understanding of neurofibromatosis and the development of clinical trials aimed at improving the quality of life for those with NF.

Mission and Vision

The mission of the Children's Tumor Foundation is to drive research, expand knowledge, and advance care for the NF community. CTF envisions a world where the effects of NF are fully understood, and effective treatments are available to all those affected. The foundation is committed to improving the health and well-being of individuals living with neurofibromatosis through research, support, and advocacy.

Research and Programs

CTF supports a wide range of research initiatives and programs designed to accelerate the discovery of treatments and cures for neurofibromatosis. These include funding innovative research projects, facilitating clinical trials, and fostering collaborations among scientists, clinicians, and other stakeholders in the NF community. The foundation's research portfolio encompasses basic science, translational research, and clinical studies, with a focus on understanding the molecular mechanisms of NF and developing effective therapies.

Synodos

One of the foundation's flagship research initiatives is Synodos, an innovative collaboration model that brings together researchers, clinicians, and patients to tackle the most critical challenges in NF research. Synodos aims to accelerate the development of new treatments by fostering multidisciplinary collaboration and sharing data and resources among participating teams.

Education and Advocacy

In addition to funding research, the Children's Tumor Foundation plays a vital role in educating the public and healthcare professionals about neurofibromatosis. The foundation provides resources and support for individuals and families affected by NF, including information on diagnosis, treatment options, and living with NF. CTF also advocates for increased public and private funding for NF research and for policies that improve access to care and support for the NF community.

Events and Fundraising

The Children's Tumor Foundation organizes a variety of events and fundraising activities to support its mission. These include the annual NF Walk, NF Endurance events, and the Cupid's Undie Run, which collectively raise awareness and funds for NF research and support services. These events provide opportunities for individuals and communities to come together to support those affected by neurofibromatosis and to contribute to the search for a cure.

Conclusion

The Children's Tumor Foundation is at the forefront of the fight against neurofibromatosis, working tirelessly to advance research, support affected individuals and families, and raise awareness about NF. Through its comprehensive research programs, advocacy efforts, and community support services, CTF is making significant strides towards finding effective treatments and ultimately a cure for neurofibromatosis.

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