Investing in life and hope

Smith-Lemli-Opitz
Research Grants

Funding research that moves us closer to understanding SLO, providing new treatments, and ultimately a cure.

Review the guidelines

Review the Smith-Lemli-Opitz Foundation Grant Application Guidelines on the lower section of this page.
 

Submit your request

Send your grant funding request to the Foundation address contained within the guidelines.
 

Expect a decision

After reviewing your application, the Foundation will notify you of its decision to fund your research.

Jukie, a boy with SLOS, in doctor's office
Investing in the understanding of SLO

Funding research to make life better

Smith-Lemli-Opitz syndrome (SLOS) is an autosomal recessive genetic disorder causing a defect in cholesterol synthesis that results in delays in all areas of development and may be complicated by one or more congenital malformations. SLOS is a life-long disorder with no cure and limited treatment options. It is often misunderstood. Many individuals who have the syndrome remain undiagnosed for long periods of time or indefinitely.

It is the goal of the Smith-Lemli-Opitz Foundation to fund research that addresses these issues. Therefore the Foundation seeks and accepts proposals for research into furthering any knowledge related to SLOS.

The Smith-Lemli-Opitz Foundation believes in funding research that moves us closer to understanding the nuances of SLOS, providing new treatments for those affected, and ultimately finding a cure for this rare genetic syndrome.

Who • What • Why of funding

Who We Fund

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 by our Medical & Scientific Advisory Board.

Our primary interest is funding experienced investigators testing initial hypotheses and preliminary data collection (often considered “seed money”).  This can lead to long-term funding by major granting institutions.

Another goal is to continually attract new and/or young investigators into the exciting field of SLOS research.

SLO young boy
Testimonial

What Our Researchers Say

Grant Application Guidelines

Please review the Grant Application Guidelines below and submit your request to the address contained therein.

Upon receipt of the application, it will be distributed to the Medical & Scientific Advisory Board for review.
The Board of Directors will then make a decision based on their own review and the advisement of the MSAB.

Questions? Contact: Dr. Michael Cohen, Director of Research for the SLO Foundation at mcohen85@gmail.com • or

Gretchen Noah at noah@smithlemliopitz.org  • +1-701-367-1976

Thank you for your interest in research. Our Smith-Lemli-Opitz Foundation network of families and professionals truly appreciates it!

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 current 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 Foundation (SLO Foundation) to fund research that addresses these issues. The SLO 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 (often considered “seed money”) leading to long term funding by major granting institutions. Another goal is to continually attract new investigators into SLOS research.

Application Process

Grant applications need to be submitted throughout the calendar year.

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)
  • principle 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 check 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 of acceptance (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) to noah@smithlemliopitz.org AND mail a paper copy to the following address:

    SLO Foundation
    Gretchen Noah
    PO Box 10598
    Fargo, ND 58106-0598
    USA

    Acknowledgement of receipt will be sent by mail and/or email to the principal investigator, within 30 days of receipt.
  • Granting Process

    Completed proposals are reviewed by the Smith-Lemli-Opitz 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 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 by May 1st.
    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 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
       ◦ a written report is due within 60 days after the end of the grant period, that includes a layman’s summary which the Smith-Lemli-Opitz Foundation may publish
       ◦ a final financial report is also due 60 days after the end of the grant period. 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 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 Foundation
  • Additional Information

    The Smith-Lemli-Opitz 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 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 noah@smithlemliopitz.org or contact Gretchen Noah at +1-701-367-1976. When an application has been submitted and reviewed, you will be notified of a final decision regarding the grant.