Children's Tumor Foundation

Last updated
Children's Tumor Foundation
AbbreviationCTF
Formation1978
TypeNonprofit Organization
Location
Key people
Annette Bakker, PhD, CEO
Gabriel Groisman, Chair
Formerly called
National Neurofibromatosis Foundation
CEO Annette Bakker, PhD speaking at CTF's Global NF Conference in Brussels in 2024. Annette Bakker at NF Conference 2024.jpg
CEO Annette Bakker, PhD speaking at CTF's Global NF Conference in Brussels in 2024.

The Children's Tumor Foundation (CTF) is a U.S.-based 501(c)(3) nonprofit medical foundation that serves as a drug discovery engine for neurofibromatosis and schwannomatosis, collectively referred to as NF. CTF funds and coordinates research to bring treatments to patients while working toward a cure. By connecting patients, clinicians, scientists, and pharmaceutical partners, the foundation drives treatment development, advances clinical care, and supports the NF community worldwide. [1] CTF is the largest private funder of all forms of NF research. [2]

Contents

NF is a group of genetic conditions that cause tumors to grow on nerves throughout the body. It includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2-SWN), formerly known as neurofibromatosis type 2 (NF2). The presentation and severity of NF vary widely; potential complications include vision or hearing loss, bone abnormalities, disfigurement, learning challenges, chronic pain, and an increased risk of certain cancers. [3]

History

Established in 1978 as the National Neurofibromatosis Foundation by Lynne Ann Courtemanche, RN, neurologist Allen E. Rubenstein, MD and Joel S. Hirschtritt, Esq., the organization changed its name to Children's Tumor Foundation in 2005. In the early years, the organization's focus was on providing patient support and organizing the NF community. [4] From the late 1980s through the mid-1990s, their aim incorporated discovering the genes that cause NF. CTF began concentrating on translational research in 2005; in 2008 CTF also began to fund clinical trials. [5] Under the leadership of President and Chief Scientific Officer Annette Bakker, the organization has shifted from a more traditional funding model to a funder-partner model in order to accelerate the drug discovery process. [6]

Notable achievements

The Foundation awarded its first grants in 1988, launching the first neurofibromatosis research program in the world. In 1985, they organized the NF Conference, the first major gathering of NF scientists and clinicians. [7] In 1990 and 1993, respectively, labs funded by grants from the Foundation identified the genes for NF1 and NF2. [5] In 1997, CTF launched an international summer camp for youth affected by NF. In 2006, the Foundation began funding a drug discovery initiative and piloted a program for a network of NF clinics. They launched a patient registry in 2012 and a specimen biobank in 2013. [6] In 2014, the Foundation established Synodos for NF2, a first-of-its kind collaboration of NF scientists working across institutions to find a cure for NF2. A similar project, Synodos for NF1, is planned to begin in 2015. [7]

Funding model

In recent years, CTF has shifted its funding model from that of a more traditional non-profit organization to one more aligned with the venture capital approach advocated by the Milken Institute's FasterCures model. CTF now situates itself as a catalyst of NF research and has created active partnerships with patients, scientists, research institutions and both the biotechnology and pharmaceutical industries. [6]

Major initiatives and key investments

Patient support

The Foundation publishes educational brochures for patients, their caregivers, and other interested parties on a variety of subjects. Many of these brochures are available in English, Spanish, and other languages. [13] Participation in the NF Registry offers additional support to patients and their families. In addition to providing up-to-date information about applicable clinical trials, the registry allows patients and their families the opportunity to receive information targeted to their specific NF-related symptoms. [14]

Advocacy

CTF advocates on a national level for funding of neurofibromatosis research. The Foundation is considered instrumental in securing both initial and ongoing funding through the Department of Defense Congressionally Directed Medical Research Program Neurofibromatosis Research Program (CDMRP-NFRP). [15] As a part of their efforts, CTF organizes volunteers to petition their representatives in Congress and the Senate online, by letter and in person, to urge continued and increased funding through both the CDMPR-NFRP and the National Institutes of Health. [16]

Fundraising programs

The Foundation sponsors a number of programs designed to raise money and bolster NF awareness, as well as provide a sense of community for those who live with NF. These programs include NF Endurance, NF Walk and Cupid's Undie Run, Poker Tournaments National Gala. [17]

References

  1. "Our Impact". The Children's Tumor Foundation. Children's Tumor Foundation. August 12, 2025.{{cite web}}: CS1 maint: url-status (link)
  2. 1 2 Jessen, Walter. "The 2010 NF Conference: Connecting the Public With the Research". www.highlighthealth.com/cancer/the-2010-nf-conference-connecting-the-public-with-the-research/. Highlight HEALTH. Retrieved 29 December 2014.
  3. "Understanding NF - Answering Questions & Shedding Light". Children's Tumor Foundation. Retrieved 2025-08-14.
  4. 1 2 3 Bettermann, Peter (2005). The National Neurofibromatosis Foundation. The Children's Tumor Foundation. p. 25.
  5. 1 2 3 4 "Innovator Spotlight: Q&A with John Risner". TRAIN Central Station. FasterCures. March 2013. Retrieved 12 October 2014.
  6. 1 2 3 Osborne, Randy (3 April 2014). "'Gate' Foundation? Enter Here for Early De-Risking and Add-On Indications" . BioWorld. Thomson Reuters. Retrieved 15 September 2014.
  7. 1 2 3 "About the Foundation: Milestones". ctf.org. Children's Tumor Foundation. Retrieved 12 October 2014.
  8. "NF Summit". Children's Tumor Foundation. Archived from the original on 29 December 2014. Retrieved August 14, 2025.
  9. "Patient Crossroads". FAQ's. Patient Crossroads. Retrieved 1 January 2015.
  10. "Patient Crossroads". NF Registry. Patient Crossroads. Retrieved 1 January 2015.
  11. "GenomeWeb". Synodos Initiative Formed to Battle Neurofibromatosis. GenomeWeb. 10 March 2014. Retrieved 20 October 2014.
  12. "Children's Tumor Foundation". Synodos for NF1: Call for Applicants. Children's Tumor Foundation. Retrieved 1 January 2015.
  13. "Resources". CTF. Children's Tumor Foundation. August 14, 2025.{{cite web}}: CS1 maint: url-status (link)
  14. "NF Registry". Children's Tumor Foundation. Retrieved 2025-08-14.
  15. Departments of Labor, Health and Human Services, Education, and Related Agencies Appropriations for 2003: Department of Labor. United States: US Government Printing Office. 2002. pp. 1243, 1247.
  16. "How You Can Help: Advocacy". Advocacy: How You Can Help. Children's Tumor Foundation. Retrieved November 11, 2014.
  17. "Events and Fundraisers". How You Can Help. August 12, 2025. Archived from the original on 2 November 2014. Retrieved 15 October 2014.

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