Search

Those of you who read our newsletter and visit our website know that research is a major focus of our organization. We have provided financial support for various research studies throughout the years. Typically, researchers have approached us with requests for projects which they feel will help identify improved treatments for MSUD. If the board and our medical advisors agree, we provide the support.

Author(s): Karen Dolan

We realize that we have been reactive rather than proactive, responding to requests rather than requesting proposals for research projects that we have identified as important. We hope to remedy this with a Think Tank – a meeting with key clinicians and researchers who will review current treatment strategies, identify potential novel approaches, and consider research needed to close the gap between what we now know and what we need to know to advance care.

We have been very fortunate in that the University of Pennsylvania’s Orphan Disease Center has offered to partner with us in this endeavor. They will be hosting a meeting of key researchers and clinicians on June 20, 2019, which MSUD Family Support Group President Sandy Bulcher and I will attend.

We look forward to this opportunity to learn from the attendees and advance research in a meaningful way.

Change the lives

of MSUD adults and children

Subscribe to our mailing list

Signup To Our E-Blast Signup with your email address to receive our e-blast newsletter.