Mefanamic Acid (MFA) and Flufenamic Acid (FFA) are non-steroidal anti-inflammatories (NSAIDS) that showed a 25% and 50% respective recovery of the TASK-3 channel in Mice.  These drugs have not been studied in humans or children for the purposes of restoring function in this channel. However, unlike most RARE diseases, having a mere potential treatment is promising.  According the Global Genes project, 95% of RARE diseases have no FDA approved treatment. In the United States FFA is not available despite it being the potentially more effective drug. MFA on the other hand is used here in the US under the name Ponstel to treat menstrual cramps.

Since MFA is the less effective drug (in mice) we are still trying to get FFA. The challenge has been trying to find a drug company to help. We have contacted many of the Japanese and Taiwanese drug companies multiple times with no response. We tracked down one US company, Mylan Pharmaceuticals, that purchased a Japanese subsidiary company from Abbott in 2015 that manufactured FFA. Our Doctor at The University of California, Irvine (UCI) submitted our case to the company’s regulatory committee for review, but did not receive a response.

FFA is also available as an arthritis cream in many countries. We have not attempted to obtain this because we understand a cream is not likely to penetrate the blood-brain barrier.