Our Research Strategy
Maximizing Our Investment
As an ultra-rare condition, Multiple Sulfatase Deficiency, or MSD, has historically struggled to attract funding from larger research funding bodies to develop a treatment or cure. The United MSD Foundation aims to ensure this devastating condition receives the research attention and funding it requires and deserves.
To address this lack of funding, the United MSD Foundation has developed a research strategy that:
Aims to maximize the impact of the funds we invest
Identifies research areas that provide the greatest scientific advances toward a cure and the most relevance for our families
Offers research grants for recommended projects following a robust application review process
Research Focus Areas
Based on the recommendation of its Scientific Advisory Board, the United MSD Foundation has been committed to advancing gene therapy for MSD, and thus financially supported projects essential to moving gene therapy closer to clinical trials. You can read more about our projects here.
With the announcement of the Bespoke Grant in May 2023, which will fund Phase I/II clinical trials for AAV9 gene therapy, the United MSD Foundation has an opportunity to examine its funding strategy for MSD research projects. The Foundation will create a Research Strategy Map to guide its funding over the next 5 years. The resulting draft will be presented by the Project Lead at the 2024 International MSD Scientific and Family Conference in Philadelphia on August 2-3, 2024.
How We Fund Research
Funds are raised primarily through grassroots fundraising activities initiated by the foundation, our supporters, and families.
The Foundation is committed to ensuring our charitable funding is used to support research with the greatest scientific likelihood of impacting children affected by MSD. Whenever possible, we invest funds with the potential for not only a scientific return but also a commercial return, allowing us to optimize our limited resources and minimize the risk associated with funding research. Any return to us will be invested to help further our goals.
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.