DFI Year in Review (July 2020 – June 2021)

  • July 13, 2020: Minutes from the 31st annual DFI business meeting (held via Zoom on July 11, 2020) were emailed to the board for review.
  • July 23, 2020: Eric, Tami, and Ellen met via zoom with Dr. Oaklander and her extended team to discuss how DFI can potentially be of assistance as she works to create a centralized HSAN1 patient registry as part of her new NIH grant. 
  • November 13, 2020: Ellen and Dr. Brown sent a message to Royal Sonesta in Boston about options for postponing the International Symposium from March of 2021 possibly to another year or perhaps considering a hybrid/virtual event.
  • November 19, 2020: Ellen sent a message requesting approval for symposium to be scheduled (per Dr. Brown and Dr. Eichler’s request) at the Royal Sonesta Sept. 29, 30 and Oct. 1, 2021.
  • January 2021: Receipts for the 2020 annual contributions to DFI were mailed out.
  • February 6, 2021: Tami updated the HSAN1 powerpoint for use on both the DFI and Neuropathy Commons (MGH) websites. A copy was also sent out to the board.
  • February 6, 2021: Mid-year meeting held remotely via Zoom. Meeting minutes were emailed out to the board for review that same night.

Continue Reading →