Hereditary Neuropathy Foundation Inc.

“Chairman and Founder Allison Moore is the sister to Courtney Hollett key employee.”

“Members of the Board of Directors are emailed a copy of the 990 prior to filing for review.”

“Annually the Board of Directors are required to sign a conflict of interest policy at its annual meeting and if any conflicts arise, the matters are addressed at that time.”

“Governing documents are supplied upon request.”

“Therapeutic Research in Accelerated Discovery (TRIAD): HNF has been instrumental in the first pivotal phase 3 clinical trial to treat the most common type of Charcot-Marie-Tooth (CMT), CMT1A by helping to identify principal investigators, clinical sites in the USA and ensuring the success of patient recruitment. HNF has also partnered with additional industry stakeholders in helping to develop clinical trial design for phase 2 trials and in the recruitment of patients. HNF designated additional clinical sites as HNF Centers of Excellence and there are now 13 in total. HNF continues to collaborate on pre-clinical studies (both novel drug compounds and gene therapy approaches) with researchers and industry to translate potential therapies for Charcot-Marie-Tooth; specifically CMT1A, CMT2A, CMT6, as well as other rarer types of CMT. HNF officially launched the exercise clinical study in the hopes to validate an anti-gravity running machine to improve quality of life for CMT patients.”

“Global Registry for Inherited Neuropathies (GRIN): HNF continues to expand the Global Registry for Inherited Neuropathies (GRIN)'s with robust natural history and longitudinal data for all types of CMT and hereditary neuropathies. GRIN's platform helps to identify the gaps in patient reported outcomes (PROs) that are hindering CMT patient care, standard of care guidelines, issues with diagnosis, therapy development and the need for improved clinical outcome measures and endpoints to support clinical trials.”

“Patient-Focused Drug Development: HNF was awarded a second Eugene Washington Patient Centered Outcomes Research Institute (PCORI) Engagement Award to host a Patient-Centered Charcot-Marie-Tooth (CMT) and Hereditary Neuropathy Pressure Palsies (HNPP) Pain Summit bringing together top leaders in industry, researchers, Health Care Providers and patients/caregivers with the theme of the importance of addressing chronic pain for the patient community. This program is an aspect of HNF's patient-focused research initiative”

“Professional services related to program implementation for conference event public relations and communications.”