Research for a better life.

2022 MWS Grant Cycle

The Mowat-Wilson Syndrome Foundation (MWSF) seeks to fund research that will in some way enhance the lives of individuals with MWS and increase their lifespan. MWSF also supports efforts to educate families and healthcare providers about MWS. As funds become available, MWSF will solicit proposals for research grants from interested scientific and medical researchers. The Board of Directors, Medical Advisory Board and Community Advisory Board are primarily concerned with achieving a better understanding of MWS and treatments for the associated conditions with the goal of improving the quality of life for people with MWS and their families.

MWS is caused by heterozygous variants in the ZEB2 gene. Its symptoms and severity can be quite variable and ongoing research is needed to better inform families and health providers.  For this reason, MWSF awards grants to applicants who seek to conduct basic, pre-clinical, natural history, translational, and clinical research projects that investigate all aspects of MWS. The MWSF is particularly interested in funding research projects that may contribute to the scientific advancement of this rare disease by:

    1. Identifying novel interventions and therapies that may significantly improve the quality of life of individuals with MWS
    2. Investigating an aspect of MWS that is less well researched or is a promising new area for research and could make a significant contribution to the understanding of MWS or its treatment
    3. Producing preliminary data that would facilitate broader or more substantial long-term funding from the NIH, research centers, foundations, or pharmaceutical companies in the future

MWSF strongly encourages interdisciplinary collaboration and the sharing of resources for MWS research. We are committed to sharing biospecimens, cell lines, animal models and de-identified data. Any content resulting from research funded by MWSF must be made available to the public and when possible used to promote further discovery. MWSF endorses the principles of the Association of American Medical Colleges (AAMC) report, “The Maintenance of High Ethical Standards in the Conduct of Research.” All research funded by MWSF must follow U.S. National Institutes of Health (NIH) Guidelines (or equivalent national guidelines in other countries) for the humane care and use of animals in research and for the use of human subjects in research. All funded research must comply with all local government regulations regarding the participation of human subjects and the use of animals in research.

Maci Whisner Research Grant

The Maci Whisner Research Grant was established in memory of Maci Whisner, a child with Mowat-Wilson Syndrome who passed away in 2021. Although Maci suffered from many conditions and her medical needs were very complex – she was such a sweet girl, the purest soul. Her story has inspired hundreds of other MWS families to embrace life and live it to the fullest, despite any challenges they may face. You can learn more at Maci’s Mended Heart on Facebook.

To be considered for funding, an LOI must be submitted via email to A confirmation email will be sent for every application received. All applications must include 3 separate PDF documents:

  1. The Cover Page (limited to 2 pages) must include the following information:

Corresponding Applicant

  • First name
  • Last name
  • Credentials
  • Affiliations
  • Email address
  • Phone number
  • Mailing address
  • 3 most recent or ongoing research projects
  • up to 3 prior publications


  • First name
  • Last name
  • Credentials
  • Affiliations
  • 3 most recent or ongoing research projects
  • up to 3 prior publications

Organizations collaborating in the research project – This list should include all universities, private and public labs but not funders.

  • Name of organization
  • Address
  • Role in research

IRB information

  • Institution overseeing the IRB process
  • A statement indicating if the study has IRB approval (Please attach approval letter) or if the study does not yet have IRB approval and an explanation of the IRB process.
  1. The Main Body of the Application (limited to 3 pages) must present the Abstract. Please note that this PDF must not include the researchers’ names
  • The Abstract must include the following: Short introduction, method, population and sample, research questions or hypotheses, purpose of research, and a timeline for the research
  1. The Budget Appendix (limited to 3 pages) must include the following information
  • List of other funding for proposed research
    • This list should include both public and private funding
  • Amount needed for research
    • Please provide a condensed budget (for the entire research project) with a short explanation for each item
  • Amount of request
    • Please provide the amount requested from the Mowat-Wilson Syndrome Foundation

Letters of support are welcome but not required.

Important Information

No single application will be awarded more than $50,000

Most grant awards will likely be from $5000 – $35,000

We do not expect to be able to provide feedback on unsuccessful applications

Please review the following policies:

Open Science Policy

Intellectual Property from Funded Research Policy

Research using Human or Animal Subject Policy


To be eligible to apply for research grant funding from MWSF, individuals or teams of applicants must demonstrate the following:

  • The applicant(s) must have a Ph.D., M.D., or equivalent degree;
  • The applicant(s) must currently hold a full-time position at any level (post-doctoral, research scientist, assistant/associate/full professor, etc.) at a qualified non-profit academic institution.

Must be submitted in English


The following will not be considered for funding

  • Proposals that have little or no relevance to MWS;
  • General fundraising campaign expenses such as dinners and mass mailings;
  • Religious, political, or other research that does not fall within the research priorities of MWSF
  • Unrelated miscellaneous expenses including but not limited to journal subscriptions, conference attendance, and advertisements.

How grant applications are reviewed

  • Only applications that comply with the submission requirements will be reviewed for funding; however, the Board of Directors of the Mowat-Wilson Syndrome Foundation can allow incomplete applications to be considered by a unanimous vote.
  • The applications will be reviewed for completeness and any applications that do not provide all the required information will be eliminated.
  • The applications will be scored and ranked based on the criteria below.

MWSF Grant Application Scoring Form

Letters of support can be provided but are not required – and these can be considered in the application review process.

MWSF Guidelines for the 2022 MWS Research Grant Cycle

The Mowat-Wilson Syndrome Foundation promotes patient-led research, where patients are involved and lead research. People who have a rare syndrome know what needs to be investigated and what questions remain unanswered; effective solutions can be designed based on their experiences. Patients with MWS have a voice through their families and caregivers. The MWSF Community Advisory Board has identified several issues that affect people with MWS that are under-researched:

  • Defecation issues
  • Medications – effects and implications due to the large number of medications
  • CBD options and seizures
  • Behavior and puberty – relationship and trends
  • Aggression
  • How aggression is affected by seizure medicines
  • Feeding and Swallowing issues
  • Digestive System issues
  • Communication
  • Immunology
  • Augmented communication
  • Sleep patterns
  • Seizure medications
  • How ADHD, ADD, and anxiety are affected by seizure medicines
  • Aphasia
  • Medicines used to treat different types of seizures
  • Relationship between puberty and seizure activity
  • Unique situations where an individual with MWS presents small but has advanced bone age and early puberty

Have questions?

If you have questions, please email

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