Mowat-Wilson Syndrome Foundation Awards Over $143K in Research Grants


Las Vegas, September 1, 2022 — The Mowat-Wilson Syndrome Foundation (MWSF) announced today that it has awarded over $143,000 to selected research projects through the Maci Whisner Research Grant program. The awards will further the scientific understanding of Mowat-Wilson Syndrome (MWS) while enhancing and strengthening the lives of individuals affected by this rare genetic disorder.

The Maci Whisner Research Grant was established in memory of Maci Whisner, a child with Mowat-Wilson Syndrome who passed away in 2021. Maci suffered from many conditions and her medical needs were very complex. Her story has inspired hundreds of other MWS families to embrace life and live it to the fullest, despite any challenges they may face.

Funding research has been a primary goal of the Mowat-Wilson Syndrome Foundation since its inception,” said Deborah Curry, president of MWSF. “We are thrilled that grants we are awarding today will advance treatments and greatly improve the quality of life for MWS patients.

MWSF works diligently throughout the year to raise funds through special events and generous donations. A better understanding of MWS is essential to supporting individuals with MWS, their families, health professionals, and the greater MWS community.

Our ability to provide grant funding is a critical component in attracting researchers,” said Al Triunfo, chairman of the MWSF research committee. “Their research in turn helps continue the growth of the MWS knowledge base, which contributes to a more promising future for individuals with MWS.

2022 Recipients of the Maci Whisner Research Grant Awards, which were fully funded, include:

Examining neurological disability in Mowat-Wilson Syndrome using brain organoids
Researcher: Dr. Rebekah Charney, Ph.D., University of California, Riverside.

Genetic and cellular interactions in Mowat-Wilson Syndrome patients with and without Hirschsprung Disease
Researcher: Dr. Sumantra Chatterjee, Ph.D., NYU Grossman School of Medicine.

 ZEB2 and Vocal Imitation
Researcher: Dr. Greg Gedman, Ph.D., the Regents of the University of California.

Epilepsy and MWS
Researcher: Dr. John M. Schreiber, MD, FAES, Children’s National Hospital, Washington, D.C.

MWSF strongly encourages interdisciplinary collaboration and the sharing of resources for MWS research. It is committed to sharing biospecimens, cell lines, animal models, and de-identified data, and 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 embodied in “The Maintenance of High Ethical Standards in the Conduct of Research,” a policy statement issued by the Association of American Medical Colleges. All research funded by MWSF must follow U.S. National Institutes of Health 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.

About Mowat-Wilson Syndrome

MWS is a recently discovered syndrome (defined in 1998) and much is still being learned about the physical, behavioral and developmental issues associated with this rare genetic disorder. Major signs include distinctive facial features, intellectual disability, delayed development, intestinal disorders, seizures, congenital heart disease, agenesis of the corpus callosum, male genital abnormalities (hypospadias), and major expressive language difficulty. Most individuals with Mowat-Wilson Syndrome are non-verbal and experience delayed development of motor skills such as sitting, standing, and walking. Despite their many difficulties, MWS children typically have a friendly and happy disposition, though they will require intense medical attention and personal care throughout their entire lives.

To learn more about the Mowat-Wilson Syndrome Foundation, please visit our website: Stay up-to-date on current events and information through our social media sites, follow us on: Facebook, Instagram, LinkedIn, TikTok and the MWSF Newsletter.

The mission of the Mowat-Wilson Syndrome Foundation is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education.