Fundraising & Grants

  • In 2020, we provided 100% of our programming with only 16% of the income.
  • We were able to raise $440K to stay afloat during 2020.
  • NDF provided grants to 9 Scientific Labs to support research.
  • 64% of our income in 2020 came from grants.

Full info available in the annual report

NDF Programs & Events

  • The launch of our live, weekly Virtual Speaker Series has hosted 22 presenters and had over 2,000 views
  • Created pre-conception screening educational materials targeted at newlyweds and those thinking about family planning.  (details in full report)
  • In January 2020, NDF Ambassadors hosted a fun, physical event to raise awareness for NDF and GNE Myopathy among the young adult community in Los Angeles.  

Full info available in the annual report


  • One of our own esteemed scientists was invited to join the Scientific Advisory Board at Scribe Therapeutics, brain child of the celebrated Dr. Jennifer Doudna; Nobel Prize winner and inventor of CRISPR technology, thus elevating the much-needed awareness of our rare disease into the purview of the scientific elite.
  • Names of international consortium of our scientific GNE Myopathy experts. (Can be found in our full report.)
  • NDF Educational, Support & Enrichment Events & Programming in 2020: (additional details and photos in our full annual report, available FREE here…)
    • Education & Wellness Event in South Africa
    • NDF-Sponsored, Multi-Disciplinary Clinic for GNE Myopathy Patients was opened
    • Appointment of a dedicated Emotional Wellness Director Carol Gelbard, to support our patient community and our Emotional Wellness Clinic
  • NDF’s international presence spans 39 countries.

Full info available in the annual report

To Date:

  • $811K of funding was allocated towards critical scientific research that has addressed FDA feedback and has propelled us closer to approval for an IND. Human clinical trials are now expected in 2023.
  • To date, $7,300,000 of funds have been directed through NDF in service of GNE Myopathy programs.
  • 79 cents of every dollar goes towards funding scientific research and core programs providing critical support to families living with GNE Myopathy.*

* vs. US-based non-rofit organization average of 63%

Full info available in the annual report

Full info available on Fundraising & Grants, NDF Programs & Events, Announcements, etc in the annual report.