Request For

young boy with Lowe syndrome holding balloons

Key Considerations

For Selecting Research

Does the research focus on the cell biological (including neuronal) abnormalities found in LS?

Would the research outcomes most directly align with the LSA’s research goal to identify targets amenable to the development of meaningful treatment (or treatments- drug, therapy, etc.) for LS by 2030?

Does the research focus on cognitive or kidney involvement or both in LS?

Does the research have implications for diseases other than LS and therefore may have greater overall impact in the research community?

Do the research findings provide cell lines or other data or materials for other researchers to use and is there a plan for disseminating these data or materials?

Has the researcher identified and/or requested additional sources of funding to share the research cost or is willing to seek additional sources of funding?

Does the proposal include a detailed budget, timelines and anticipated outcomes?

Does the proposal include provisions for a summary report 2 months before the end of the funding period and 6 months after the start of the project?

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Policies Governing Research Grants

A. Background

The Lowe Syndrome Association, Inc., (LSA) is an international, voluntary, non-profit
organization made up of parents, professionals, and others who are interested in Lowe syndrome. It was founded in 1982 and incorporated in 1986.

The primary purposes of the LSA are to: foster communication among families, promote a better understanding of Lowe syndrome and the potentials of individuals with this condition, provide information, and encourage and support medical research relating to Lowe syndrome. The LSA  publishes a biannual newsletter, On the Beam, online content, communicates via Facebook and other social media outlets and sponsors international conferences. The official slogan of the LSA is “Circle of Care…Vision for a Cure.”

The LSA, is governed by a Board of Directors. In scientific and medical issues, the Board solicits the advice of the LSA Medical and Scientific Advisory Board, which is made up of physicians and scientists representing various backgrounds.

B. Areas of Research Interest

  1. achieving a thorough understanding of the metabolic basis of Lowe syndrome, especially how a phosphatidylinositol enzyme deficiency leads to the various features of Lowe syndrome;
  2. developing a better understanding and treatment of the major complications of Lowe syndrome including but not limited to neurologic and behavioral problems, corneal keloid, degenerative bone and joint disorders, and renal diseases. Proposals for the establishment of a clinical research database and/or a longitudinal study of the progression of renal and/or neurological features will be given special consideration.

C. Size and Time Period of Grant

The LSA is prepared to provide annual funds to support an appropriate research project. The researcher may re-apply for a second year of funding, if offered.

D. Funding Eligibility Requirements

The LSA invites applications from researchers of all types, including but not limited to universities, hospitals, and other non-profit organizations with interest in research in the previously specified areas.

E. Grant Funding Restrictions

The LSA grant money may not be used as salary for the principal investigator, for honoraria for consultants, for the purchase of standard, non-consumable laboratory equipment, to purchase services from other research laboratories, or for overhead or indirect costs. Also, grant funds must be held in interest-bearing accounts payable to the grant.

F. Reporting Requirements

The researcher must submit a progress report at the end of six months for annual grants. This report must include a financial statement showing the expenditure of grant funds. Consideration for re-application for a subsequent grant will depend on satisfactory progress demonstrated in the progress report. A final report must be submitted after twelve months and all unexpended funds must be returned to the LSA.

G. Safeguarding the Rights and Welfare of Human Subjects

If any human subjects are involved in research supported by the LSA, the researcher must obtain the informed consent of each subject, or the informed consent of a parent or guardian for each minor subject, prior to the participation of human subjects in any study or procedure.

No research involving human subjects shall be made unless the research is given initial and continuing review and approval by an appropriate committee of the researcher’s institution. The institution must provide written assurance that the research project complies with the regulations of the United States Department of Health and Human Services (see IV.A.10 below).

Guidelines for Proposals

A. Application

The total application must be no more than 12 pages (8″ x 11″) long, not including
curriculum vitae and bibliography. Each application must contain the following items:

  1. The name of the applicant, the title of the research project, the name and address of the institution, the name and approval signature of the institution’s financial officer, the name and address of the chairman of the department in which the research will be done, and the name and address of the supervisor of the research.
  2. A brief (about one paragraph) summary of the purpose, nature, and potential significance of the proposed project, written as much as possible in lay language for a non-scientific reader.
  3. A scientific summary (no more than 1 page long) of proposed research, including a statement of what the researcher proposes to learn, how the researcher proposes to conduct the research, and the expected duration of the study.
  4. A summary of the qualifications of the researcher, including his or her qualifications to carry out the study and including studies he or she has done previously that make him or her competent to do the study.
  5. A description of the facilities available to carry out this study.
  6. A detailed budget, including identification and explanation of all proposed expenses.
  7. A statement listing all sources, amounts, and purposes of governmental or philanthropic support the researcher is receiving for this study.
  8. A detailed research plan, including all information necessary for reviewers to understand fully the proposed research. The plan should provide a clear statement of the research question and the theoretical base for the project. The plan should summarize similar and relevant work by the applicant and others as reported in the scientific literature or known to be in progress. The plan should also state the specific aims and hypotheses of the research. The plan should describe the strategies to be employed, including the nature and sources of data to be collected.
  9. Curricula Vitae of investigators to be involved in the study.
  10. A statement by the institution’s review board assuring that the proposed study has been reviewed and approved.
  11. A letter from the applicant’s supervisor of research (or from the applicant’s department chairperson if the applicant is supervising his or her own research), approving the research, confirming the availability of equipment and facilities for the project, and describing the capacity of the investigator to carry out the proposed study.
  12. A statement by the researcher agreeing to provide an 6-month progress report and a final 12-month report, to return unexpended funds to the LSA after twelve months, and to acknowledge the support of the LSA in all publications resulting from this grant.
  13. A statement by the researcher agreeing to make available to the scientific community any reagents and/or data generated using the support of the LSA, once they are published

B. Submission of Application

Proposals can be submitted via the submission form above or email before the deadline to: Jeri Kubicki, VP, Lowe Syndrome Association at

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