NF Northeast is committed to advancing biomedical research in fields relevant to neurofibromatosis. NF Northeast has been funding research proposals since 1990. Click Here to see the list of projects funded by NFNE. To date, we have granted close to $3,000,000 to fund proposals from researchers/institutions within and outside of the Northeastern United States. Fields of research include basic science, translational, and applied clinical trials.
The NF Northeast Medical and Science Committee reviews applications and provides funding support to successful awardees. The grants are typically awarded for 1- to 2-year periods with direct cost budgets with an option for renewal based on available funds. The funding may include partial support to supplement existing grants.
NF Northeast also invites applications for “seed funds” to initiate projects that allow the investigator to generate early data and seek larger funds from other granting agencies and/or pharmaceutical industry support. Often, it is the funding from NF Northeast that inspires early discovery which later becomes a much larger and promising project.
Since joining other NF organizations from around the country in 1996 to create the National NF Advocacy Coalition, we at NF Northeast have worked closely with members of the United States House and Senate to secure over $600 million for NF research, not only at the National Institutes of Health (NIH) but also through the Department of Defense Congressionally Directed Medical Research Program (CDMRP).
The NetworkEdge is a timely review that summarizes recent highlights from NF research and clinical trials sponsored by the NF Network in partnership with NF Northeast.
Bite-sized pieces of information allow you to easily find and focus on those topics of most interest to you, whether it is NF1 learning disabilities studies, NF2 clinical trial updates, or schwannomatosis news.
To read the most current issue or access archived issues of The NetworkEdge, go to:
The NetworkEdge Volume 21 (Winter 2022)
The NetworkEdge Volume 20 (Fall 2021)
The NetworkEdge Volume 19 (Spring 2021)
NFNE Resources and Links
To learn more about clinical trials and how they work, Click Here.
To view the most up-to-date list of clinical trials, Click Here.
Neurofibromatosis Research Program Opportunities
NF Northeast is a member of NORD and the Massachusetts Biotechnology Council
Neurofibromatosis Northeast (NFNE) is a nonprofit organization committed to advancing biomedical research in fields relevant to neurofibromatosis (NF). Fields of research may include basic science or applied clinical trials. The NFNE Medical and Research Committee will review applications and provide funding support to successful awardees. The grants are typically awarded for 1- to 2-year periods with direct cost budgets up to approximately $50,000, with an option for renewal based on available funds. The funding may include partial support to supplement existing grants.
NFNE also invites applications for “seed funds” to initiate projects that allow the investigator to generate early data and seek larger funds from other granting agencies and/or pharmaceutical industry support. NFNE often funds discovery phase projects that require time and investment in early-stage NF research with the goal of becoming eligible for applying to larger institutions for much larger-scale projects.
Members of the NFNE Medical and Scientific Committee:
Nicole Ullrich, MD: Director of Neuro-Oncology at Children’s Hospital Boston and Director of Neurologic Neuro-Oncology at Dana-Farber since 2005. Dr. Ullrich serves as Primary Investigator of the multicenter NF Clinical Trials Consortium that has now opened 12 planned clinical trials as interventions for complications of NF1, including plexiform neurofibromas, brain tumors, and cognitive difficulties.
Justin Jordan, MD: Assistant Professor of Neurology at Harvard Medical School and a neuro-oncologist in the Massachusetts General Hospital Family Center for Neurofibromatosis and Pappas Center for Neuro-Oncology, where he also serves as the Clinical Director.
Lori Ryan, RN, MS: Chair of the Medical and Science Committee at NFNE. Lori has served on the peer review panel for the Department of Defense’s Congressionally Directed Medical Research Program.
Marissa Powers, PhD: Marissa received a BS in Science in Biomedical Engineering from Trinity College and her PhD in Biomedical Engineering (Neuroprosthetics) from Drexel University. She is currently a Solutions Architect at Intel Corporation in Health Sciences.
John Thomson: John served as Vice President of Strategic Research Alliances Networks at Vertex Pharmaceuticals Incorporated. Prior to that, he spent about five years as the Vice President of Research in charge of Vertex’s Cambridge, MA-based discovery research. He joined Vertex in 1989 as a founding scientist.
We invite you to submit your request for funding using this link Research@nfnortheast.org to submit LOI, full proposals and progress reports.
NFNE encourages succinct applications prefaced by a cover letter that contains a 1-page summary in lay language that should be included with the LOI. Comments from our initial review of the LOI may be used to guide the type and quantity of information needed for the complete grant application. Specific questions raised during LOI review should be addressed in a cover letter submitted with the completed application.
Please send any inquiries to Sharon Klein, Executive Director, NFNE at Info@nfnortheast.org.
The NF Northeast Application Process
Applications may be submitted to NFNE throughout the year. Typically, the review time will require approximately 2-3 months, but the award may be delayed depending on available NFNE budget and administrative considerations. Awardees may be requested to attend general or executive NFNE meetings to accept the awarded grants and/or to discuss the proposed or completed research with NFNE members. All clinical research and animal studies must comply with existing institutional and local and federal government regulations and guidelines for the protection of human and animal research subjects.
Preferred candidates will provide evidence for the following:
- Successful track record of biomedical research, including publications in peer-reviewed journals and awards from NIH or other organized granting agencies.
- Demonstrated commitment to NF research.
- Institutional support, with agreement to accept the NFNE grant without overhead costs (or minimal overhead costs as agreed upon with NFNE).
- Other existing or pending research support necessary to complete the proposed research if NFNE awards partial or supplemental funds.
When applicable, all clinical research must be reviewed and approved by the relevant Institutional Review Board. Preclinical research must comply with local and federal regulations and guidelines.
The applicant will submit a brief (2-3 page) Letter of Intent (LOI) and Curriculum Vitae (CV) to obtain initial feedback about the feasibility of grant support for the proposed project. Please state how much total funding will be requested and give an approximate breakdown of how this will be utilized. NFNE encourages succinct applications prefaced by a cover letter that contains a 1-page summary in lay language that should be included with the LOI. Comments from initial review of the LOI may be used to guide the type and quantity of information needed in the complete grant application. Specific questions raised during the LOI review should be addressed in a cover letter submitted with the completed application.
The applicant may utilize a completed application prepared for another funding agency (e.g., NIH, DoD, or other funding organizations). The applicant should provide explicit evidence that existing or pending funds do not overlap the proposed research proposal submitted to NFNE, including a letter from the institution’s office of grants and contracts.
The outcome of any possible patent applications, derived from research, should be explained within the application or in a cover letter. In some situations, a principal investigator/awardee may be a trainee/associate of a senior investigator whose ongoing research is important for the project. NFNE may also determine that research projects require the resources and environment listed in the original submission. NFNE must approve any transfer of awarded grants between departments or institutions.
The final grant proposal should include a timeline, outlining milestones of the research planned for completion on a biannual basis. Unless otherwise noted in the initial award letter, the awardee must provide brief progress reports every 6 months after initiation of the project, including discussion of progress in terms of the original milestones. If a grant is funded for over 6 months, NFNE reserves the right to link funding allocation to receipt and review of the 6-month progress report. The format of the progress report should include a lay summary and any manuscripts or abstracts that have been submitted or published by the investigator based on or related to the research project.
Unless otherwise stipulated, all publications developed from the funded project should include acknowledgment of support from NFNE, cited as follows: NEUROFIBROMATOSIS NORTHEAST, 9 Bedford Street, Burlington, MA 01803, www.nfnortheast.org, email@example.com
The applicant must also provide a final report at the end of the project, including how the funds were spent and definitive outcomes, and include any abstracts or publications that were developed from the research.
The grant does not imply continued funding. The applicant must reapply for a grant if the project continues. Funding does not constitute automatic/unstructured endorsement of funded labs or affiliates in their own public disclosures. Funding of grants is made in a minimum of two payments, with the first installment paid upon NFNE’s approval of the grant and awardee notification, and the second installment paid upon the completion of the project and receipt of required progress and final reports.
Conflict of Interest
Investigators need to disclose potential conflict of interests and make complete disclosures of connections with relevant commercial enterprises.
Click Research@nfnortheast.org to submit LOI, full proposals, and progress reports