The Neuromuscular Disease Foundation Scientific Advisory Committee examined the peer reviewed research paper entitled “Pharmacokinetics and clinical efficacy of 6’-sialyllactose (6 SL) in patients with GNE myopathy” from Dr. Jin-Hong Shin’s group at Pusan National University School of Medicine, which was published by the journal Biomedicine & Pharmacotherapy in December of 2023.  This paper can be freely viewed online or downloaded from the publisher at the following link:

 https://www.sciencedirect.com/science/article/pii/S0753332223014877

The paper examines the use of 6′-sialyllactose (6SL) as a nutritional supplement to treat GNE myopathy. In their manuscript, the authors conclude that 6SL may be a good therapy for GNE myopathy as it decreased muscle degeneration, slowed the decrease in limb muscle strength, and increased sialic acid levels. While NDF does not recommend any particular treatment, we have had sufficient interest from patients in 6SL to have the NDF Scientific Advisory Committee review this paper.  Based solely on the data presented in the paper, the NDF Scientific Advisory Committee agrees with the peer-reviewers that this report appears scientifically sound and encourages the GNE myopathy patient community to review this paper to become familiar with this work.  As with any study, patients should read the report carefully and make their own determination about how this work affects your treatments. 

If you are a patient with GNE myopathy and would like to acquire 6′-sialyllactose, we can provide you with information on potential sources. Please email us at essexresearchllc.@gmail.com with a confirmation of your GNE myopathy diagnosis.