A message from the President of RASopathies Network:
RASopathies research is being threatened. Read on to educate yourself on what is happening.
Science is an investment in the future- that we can benefit from. The National Institutes of Health (NIH) is a scientific powerhouse in the world and a driver of the economy… every dollar investment into the NIH returns at least 2 dollars back and in some instances, more. Read More
WHAT IS HAPPENING:
- There has been a communications freeze.
- There has been a prolonged delay in research project peer review and funding decisions. (see how this is affecting us directly below)
- There has been a massive cut to all Facilities & Administrative budgets (“Indirect costs” of doing research science in academic and medical institutions) to the point that it could irreparably harm the top-notch science enterprise in America.
Major research universities and university hospitals and children’s hospitals depend on NIH (federal) grant money to carry out all kinds of research- from work with model systems to investigate the basic biology of life, to work with human specimens and human data, to implementation of human clinical trials to test interventions and medications. A lot of health care, biomedical, and adjacent and dependent industries will feel these impacts. Job loss will undoubtedly ensue and it will strain the economy.
PRACTICAL DIRECT IMPACTS:
1. Our application to the NIH using the R13 conference grant mechanism to support part of the costs of the 9th International RASopathies Symposium is awaiting a meeting of the Advisory Council to decide on funding our application.
It has been peer reviewed and received a score that likely would lead to it being funded (as have 5 previous symposia).
The Advisory Council meeting scheduled for January 30, 2025 was canceled, and we have had no communication with respect to when or if it will be rescheduled.
2. In the Fall of 2024, physician-scientists in our network and on our Advisory Board submitted an NIH application to fund a project to develop a RASopathies Research Clinical Consortium (R2C2) as part of a broader NIH-supported Rare Disease Clinical Research Network (RDCRN). RASopathies Network and other family support group leadership members signed letters of support and pledged participation in the consortium if funded. It would build out field cohorts at RASopathy speciality clinics within several institutions across the US to complement the ongoing NIH clinical center RASopathies natural history study, among other things.
THIS APPLICATION IS AWAITING PEER REVIEW, which has been delayed indefinitely.
3. A third project to carry out a phase 3 clinical trial of MEK inhibitor for RASopathy-associated hypertrophic cardiomyopathy is also stalled in the NIH pipeline.
These are three concrete examples of how the current policies are impacting our mission to advance research on RASopathies and are hindering the progress for understanding, care, and treatment of individuals and families with a RASopathy.
We can’t just wait this out… We need to speak out about these policies and the benefits of NIH funded research and let our elected representatives know about these impacts.
Keep in mind that severe cuts and job losses are also happening at other science and public health institutions like the CDC, ARPA-H, FDA, and NSF potentially undermining America’s health and leadership in the world.
We will be advocating to maintain a strong biomedical workforce and strong research funding to advance fundamental knowledge and progress on treatments for RASopathies and other rare diseases.
