On Sunday, April 3rd, 2022, NDF held an important webinar, entitled Seeing Clearly: The State of NDF. More than 35 participants from our global community attended, representing a dozen different countries. 

The interactive event served as an opportunity to provide full transparency for NDF’s donors and community, sharing important information about the organization, such as the latest updates on what the NDF Scientific Team has accomplished, and where we are with respect to ongoing grant making, patient centric initiatives, such as the The International Gene Therapy Development ProgramSeeing Clearly: The State of NDF ended with an interactive Q&A, where participants were invited to ask questions to the webinar’s three presenters: Geoffrey M. Gee, Esq., NDF’s newly appointed Executive Director, Dr. Angela Lek, NDF Scientific Consultant, Dr. Noah Weisleder NDF Scientific Advisor and Rich Horgan, an NDF Biotechnology Consultant.

During the webinar, which is available to view below, many important questions were  addressed: How does NDF manage and use its financial donations? What scientific progress has been made toward a treatment for GNEM? How close are we to human dosing? Are among the topics openly discussed.

During the introduction, Geoffrey shared  financial information about the organization, including total funds available, allocation of funds, grant making, the organization’s operating budget, number of employees on the payroll, and much more.

Geoffrey also shares the process by which the NDF ensures that all donations are used in the most efficient and respectful way, to maximize their effectiveness, to benefit GNEM patients, and support the programs which bolster them.

Geoffrey announced that NDF has expanded its outreach to patients worldwide, as we now have representation in 45 countries.

Dr. Angela Lek followed Geoffrey’s financial updates and operational input, with the latest updates on the science side, accompanied by updates and input from Rich Horgan, NDF Biotechnology Consultant, and Dr. Noah Weisleder, Scientific Advisor.

Following the webinar, NDF received such positive feedback from patients and donors, that we decided to share the complete recording of the event to ensure that the information shared remains accessible to anyone interested in learning more, or who missed the original broadcast. 

You can watch the entire video here:

NDF is fully committed to maintaining channels of open communication and transparency with its community. We honor our donors and patients’ right to ask questions, and to be informed in a timely manner, on all financial, scientific and operational matters pertaining to the NDF. 

If you have any questions, comments or suggestions, for how NDF can best serve its donors, patients and greater community by making information available, please contact us at info@curegnem.org