ALS gained immense attention following the Facebook Ice Bucket Challenge. It is not unreasonable to hold recipients of large sums of government funding and donations (in the hundreds of millions) fiscally and ethically accountable for the direction of research and the use of donations.
I am concerned with ethics and allocation of funds within the ALS research community, including a lack of reporting in serious incidental findings, ignoring major studies, showing bias to study compounds with weak pre-clinical data, and unhealthy conflicts of interest.
As a way to fight back, I support integrative research initiatives and organizations committed to studying ALS outside of political, patent and medicinal special-interest.
This requires a cross-functional working group to partner together for honest research in neurodegeneraive disease. Please contact me for more information if anyone (patients, families, providers, advocates, and researchers) are interested in joining a truly not-for-profit committee to evaluate the state of science in ALS and related research areas.
I am always available as a resource for ALS patients and often provide support at low or no cost to this population. Together, we can make ALS a livable disease for everyone.