Children's Tumor Foundation

Children's Tumor Foundation
Abbreviation CTF
Motto "Ending NF Through Research"
Formation 1978
Location
Key people
Annette Bakker, PhD, President and Chief Scientific Officer
Linda H. Martin, Chair

The Children's Tumor Foundation (CTF) is a 501(c)(3) foundation dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis (NF). Their four-part mission includes propelling drug research and development through a series of strategic investments, strengthening patient support, increasing public awareness of NF and establishing best practices in clinical care for affected individuals.[1] The Foundation is incorporated in all 50 states with active chapters and affiliates in 37 states.[2] CTF is the largest private funder of NF research.[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 & 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 both English and Spanish.[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. In addition to these efforts, The Foundation also sponsors an annual summer camp for youth living with NF.[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 Racing4Research, NF Endurance, NF Walk and Cupid’s Undie Run.[17]

References

  1. "About the Foundation". The Children's Tumor Foundation. Children's Tumor Foundation. Retrieved 8 August 2014.
  2. "Community Relations". Children's Tumor Foundation.
  3. 1 2 Jessen, Walter. "The 2010 NF Conference: Connecting the Public With the Research". http://www.highlighthealth.com/cancer/the-2010-nf-conference-connecting-the-public-with-the-research/. Highlight HEALTH. Retrieved 29 December 2014. External link in |website= (help)
  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. (registration required (help)).
  7. 1 2 3 "About the Foundation: Milestones". ctf.org. Children's Tumor Foundation. Retrieved 12 October 2014.
  8. "CTF.org". Children's Tumor Foundation. Retrieved 3 January 2015.
  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. "CTF.org". Information Brochures. Children's Tumor Foundation. Retrieved 4 January 2014.
  14. "CTF.org". NF Camp. Children's Tumor Foundation. Retrieved 4 January 2015.
  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. "CTF.org". How You Can Help. Retrieved 15 October 2014.

External links

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