Grants and Awards

The Wiedemann-Steiner Syndrome Foundation believes that lack of research presents the biggest barrier to care for patients and awards micro-grants and awards to organizations interested in researching Wiedemann-Steiner Syndrome and its related symptoms. The foundation’s mission is to expand the body of knowledge for rare genetic syndromes like WSS. We do this by supporting researchers, research institutions and non-profits whose mission aligns with ours.

Grants

WSS Patient Care Request for Proposals (RFP) – Rolling Submission Deadline

The Wiedemann-Steiner Syndrome Foundation (WSSF) is dedicated to breaking down barriers to care for patients by advancing critical research. We believe that a deeper understanding of the challenges faced by our community is vital to improving patient care and medical practice.

**Current Priorities:** Our ongoing survey has revealed key symptoms that significantly impact the daily lives of patients and their families. Here are the top concerns:

  • Disruptive behaviors (e.g., impulsivity, aggression)

  • Digestive system issues (e.g., constipation, vomiting)

  • Intellectual disability

  • Feeding difficulties

  • Attention issues

  • Communication challenges (e.g., limited speech)

**Research Grant Opportunity:** We are excited to announce our rolling grant applications for projects aimed at addressing these priorities! With a budget limit of $30,000 and a focus on patient care, we encourage collaborations and innovative approaches.

**Application Requirements:**

  • Address how your study will improve care

  • Provide a scientific summary and budget justification

  • Include a lay summary for a non-technical audience

**Submission Guidelines:** Apply via Google Forms and expect a response within 45 days! For any questions, reach out to Helen Hernandez at helen@wssfoundation.org.🗓️

Let’s work together to enhance the quality of life for those affected by Wiedemann-Steiner Syndrome!

Review the RFP

Awards

Mouse Model Grant Awarded

Our first grant, in the amount of $200,000 has been awarded to Dr. Hans Bjornsson of the University of Iceland. Dr. Bjornsson’s project, Creation of a Specialized WSS Mouse Model to Establish Postnatal Malleability of the Neurological Phenotype in WSS, will take place over the next two years.

Rare Disease Community Grants Awarded

The WSS Foundation has allocated 5% of donations toward assistance for the “undiagnosed” community and other rare disease foundations. In 2017 the WSS Foundation chose the following organizations for award monies:

NORD (National Organization for Rare Diseases)
All Things Kabuki