Grant Application Guidelines

Click here to download a PDF of the Grant Application Procedures.

Overview

Smith-Lemli-Opitz Syndrome (SLOS) is an autosomal recessive genetic disorder causing a defect in cholesterol synthesis which results in delays in all areas of development and may be complicated with one or more congenital malformations. SLOS is a life-long disorder with no cure, limited treatment options and is often misunderstood. Many individuals with the syndrome go completely undiagnosed. It is a goal of the Smith-Lemli-Opitz/RSH Foundation to fund research that addresses these issues. Therefore the Foundation seeks and accepts proposals for research into furthering any knowledge related to SLOS.

Proposals and Funding

Research proposals up to $25,000 (USD) and two years in scope (preferably only a single year) for any aspect related to SLOS are accepted and reviewed. Our main interest is in providing funding to experienced investigators for testing of initial hypotheses and preliminary data collection leading to long term funding by major granting institutions (often considered “seed money”), and continuation of ongoing research while other funding is in the final stages of acceptance. However as a secondary goal in the research arena, we wish to continually attract new investigators into the exciting realm of SLOS and welcome any proposals they may put forth.

Application Process

Grants are currently approved on a yearly deadline. For 2012, the deadline for submissions is February 15, 2011. The application should be no longer than 15 pages of type 12 font and 1 inch margins (exclusive of budget and other requested documents) and must be in English. It should include the following:

An information page which lists:

  • Project Title
  • Start Date and Length of Project
  • Requested funding amount
  • Research subject type (human or animal)
  • Principal investigator mailing and contact information
  • Institutional Information and Authorized Officer signing for the Organization
  • Where funds are to be sent and the exact name of who to make the checks out to
  • An abstract summarizing the project. This should include what issue is being addressed, how the work will be accomplished, and why the project is important for treatment or increasing the knowledge base.
  • A detailed description of specific goals including objectives and hypotheses
  • A critical evaluation of any prior related research outlining what gaps this project is intended to fill and why this is important
  • A thorough description of research design and methods. Include the methodology for collecting, analyzing, interpreting and reporting of data, and if it is a new methodology, explain how it is different or advantageous over previously used methods. Also include limitations, expected difficulties and possible alternative approaches.
  • A description of environment and resources.
  • A listing of project personnel and percentage of time they will devote to this research.
  • Evidence of current or pending project application to the relevant Institutional Review Board for human subjects and/or Animal Use and Protection Committee for animal subjects. A statement of use of these types of subjects must be included.
  • A comprehensive Budget outline in U.S. Dollars. It is recommended that no more than 10% of requested budget is indirect costs. If proposing a multi year project, include a budget sheet for each year in addition to a budget sheet for the total of the entire project. Including:
  • Salary and Benefits by Individual. Salary of Principal Investigator is not expected to be included. If it is, a detailed explanation must be included.
  • Equipment and Supplies by Category
  • Patient Care Itemized by Type of Expense
  • Other, Itemized
  • Statements ofacceptance (templates to follow below)

Please submit an electronic version of the grant application in Microsoft Word Document format with all attachments by midnight (US eastern standard time) February 15 to research@smithlemliopitz.org AND mail apaper copy to the following address by the due date.

Please send to:
SLO/RSH Foundation
Melissa Gallagher
1395 Colony Drive
Saline, MI 48176
USA

Acknowledgement of receipt will be sent by mail and/or email within 14 days of receipt to the principal investigator.

Granting Process

Completed proposals are reviewed by the Smith-Lemli-Opitz/RSH Foundation Medical Advisory Board for evaluation and interpretation. Final determination is made by the Board of Directors based on the recommendations of the Medical Advisory Board. Applications are evaluated on the following:

  • The potential significance of the results of the research.
  • The feasibility of the project given the investigators involved and the resources to be used. In addition, the feasibility of the Smith-Lemli-Opitz/RSH Foundation to be able to provide the requested funding.
  • The likelihood that long-term funding can be obtained for additional research.

We welcome names and contact information for individuals you feel would be appropriate outside reviewers. They must be qualified to review the proposal, have no conflict of interest and have not worked with you in the last two years.

Notification of acceptance or denial is typically given 8-12 weeks after the due date. If the grant is approved a letter of approval will be sent to the applicant and funds will be available for immediate disbursement. Funded research proposals must provide the following:

  • At every six month interval over the course of the approved project, a progress report of the research must be submitted to the Smith-Lemli-Opitz/RSH Foundation for review. This report must include:
    • A summary of progress made thus far in the project
    • Details of any difficulties encountered and solutions used or proposed
    • A description of any proposed changes to the project and why the changes are required.
    • An updated Budget listing expenditures to date.
    • Within 60 days after the end of the grant period, a written report is due that includes a layman’s summary which the Smith-Lemli-Opitz/RSH Foundation may publish.
    • Also with 60 days after the end of the grant period, a final financial report is due.
    • If the grant is for a multiple-year project, reports are due annually on the anniversary of grant commencement.
    • Immediate notification of changes in Principal Investigator or Institution
    • Notification of any patent application resulting from work performed for the funded research grant.
    • On any public report of the granted research project, the Smith-Lemli-Opitz/RSH Foundation must be named as a source of funding, no matter if funding was partial or whole and a copy of the report must be sent to the Smith-Lemli-Opitz/RSH Foundation.

    Additional Information

    The Smith-Lemli-Opitz/RSH Foundation reserves the right to publish some basic information about the research grant proposals such as: title, principal investigator, institution, amount requested and/or rewarded and the abstract summary. No trade secrets or confidential information identified as such will be made public.

    The Principal Investigator and the grantee Institution indemnify and hold harmless the Smith-Lemli-Opitz/RSH Foundation, its Board Members, Officers, agents, advisors and constituents from any claim judgment, award, damage, settlement, liability, negligence or malpractice arising from research related to the research grant.

    The agreement between parties is a funding agreement only.

    If you have any questions about the application process, please contact us at research@smithlemliopitz.org or contact Michelle Gardner at 315-986-2708. Once an application has been submitted, do NOT contact us to find out status; we will notify you with a final decision.