United for Lifesaving Research: A Collaborative Call to Defend NIH Funding
The MSUD Family Support Group believes that research is the key to improving the daily quality of life for individuals and families living with MSUD. Recently, we championed support for research by drafting a letter advocating for sustained federal investment in rare disease research—a letter that has been endorsed by several allied organizations. This collaborative effort reflects our shared commitment to advancing treatments and improving outcomes for those affected by rare diseases.
On behalf of the undersigned organizations dedicated to advocating for individuals and families impacted by rare diseases, we express our deep concern over the proposed funding cuts to the National Institutes of Health (NIH). The suggested policy change to cap indirect cost funding threatens to strip essential research institutions of the resources they need—resources that are vital for maintaining laboratory space, equipment, and staffing. Without these critical supports, groundbreaking research that provides hope to millions of Americans could be delayed or even halted.
Rare disease research already faces unique challenges due to the limited number of patients affected by each condition, making sustained federal funding an indispensable lifeline. The NIH has long been instrumental in driving discoveries and therapeutic advancements, particularly for conditions that receive little private investment. A reduction in funding would not only jeopardize current research projects but also undermine future innovations, with serious repercussions for the broader rare disease community.
Beyond the impact on research institutions, the proposed funding cuts carry significant economic consequences. Rare diseases impose a heavy financial burden on society, with per-patient costs far exceeding those of more common conditions. Reducing NIH funding risks exacerbating these challenges by stalling progress that not only saves lives but also sustains economic stability through job creation and continued innovation in medical research.
Sincerely,
Sandy Bulcher, MSUD Board President
Maple Syrup Urine Disease (MSUD) Family Support Group
We urge you to join us in this vital advocacy effort by sending the letter to your representatives. Your support sends a powerful message that research is essential for advancing treatments and improving the quality of life for those affected by rare diseases. We encourage you to send this letter to your representatives, underscoring our shared commitment to defending lifesaving research. Together, we can ensure that the momentum of scientific discovery continues and that our nation remains a leader in medical innovation.
Contact Your Federal And State Legislators
MSUD community members are encouraged to contact members of Congress and your state legislature members to personally advocate for MSUD favorable legislation to close the gaps in access to medically necessary treatment.
Attached is a “MSUD Fact Sheet” to assist you in preparing letters for your legislator. To further assist, you can find information about important proposed Federal Legislation here.