2024 Treasurer’s Report

A big thank you to the PMD community as 2024 marked another strong year from a fundraising perspective! We raised almost $80,000 for the year putting us ahead of the $75,000 we raised in 2023. A big part of our success this year was a $20,000 donation from Ionis Pharmaceuticals we received in September. The donation is intended to help further the education of the broader community on PMD. We look forward to providing updates as the Board determines the best use for these funds. 

In December the board committed to funding $100,000 over 2 years for a new research grant. 

The grant will help fund research of ASOs for therapeutic treatments to treat genetic mutations of PMD that are not currently in the ongoing clinical trial. Currently, the trial is only open to duplications of the PLP-1 gene, this research is to determine if the same therapeutic approach will see positive results in other genetic diagnoses of PMD.

Following the grant commitment the Foundation remains in strong health with over $70,000 of additional unrestricted funds. The Board remains committed to finding the best use for these funds to further the mission of the PMD Foundation.