Hereditary Neuropathy Foundation Inc.

“Allison Moore CEO and Founder is sister to Courtney Hollett Executive Director.”

“Organization distributes to Board members via electronically prior to filing Form 990.”

“The Organization, distributes conflict of interest policies at its annual meeting and if matters give rise to a conflict of interest the Board of Directors eliminates the conflict upon discovery.”

“The compensation review was undertaken for the newly established Executive Director's position of which the Board of Directors determined the compensation based upon the market and size of the organization.”

“The Organization makes it governing and other financial documents upon request.”

“Therapeutic Research in Accelerated Discovery (TRIAD) - HNF has been a leader in collaborating with industry on clinical trial development. The reported results of the drug PXT3003, the first pivotal phase III clinical trial to treat CMT shows promise. Other industry stakeholders count on HNF in helping to develop clinical trial designs, improved outcome measures and endpoints for Phase 2 clinical trials and for the recruitment of patients through HNF's patient registry, Global Registry for Inherited Neuropathies (GRIN). HNF relaunched GRIN with a new proprietary platform (formally was licensed through a third party) to expand and add more capability to enhance natural history and longitudinal studies for CMT and other inherited neuropathies. As part of the TRIAD program, HNF continues to collaborate on preclinical studies (both novel drug compounds and gene therapy approaches) with researchers and industry to translate potential therapies for CMT. HNF officially launched the anti-gravity running machine exercise clinical study to validate as a modality of exercise to treat and improve quality of life for CMT patients.”

“Patient-Focused Drug Development- HNF hosts their second annual Patient-Centered CMT Summit. This years Summit included Hereditary Neuropathy Pressure Palsies (HNPP), a form of CMT that presents with chronic pain. The purpose was to bring together top leaders in industry, researchers, Health Care Providers and CMT/HNPP patients/caregivers with the theme of the importance of addressing chronic pain. This program is an aspect of HNF's patient-focused research initiative which helps to identify the gaps using 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.”

“Medical Outreach and Education-HNF continues to educate Health Care Providers on CMT and related inherited neuropathies as well as to inform on the pipeline of treatments for their patients to consider to participate in natural history, longitudinal and clinical studies and trials. HNF long-term partnerships with Neurology Reviews (NR) and the American Association of Neuromuscular & Electrodiagnostic Medicine ( AANEM) have been instrumental in educating neurologists and others. HNF published materials in the prestigious NR annual Rare Neurological Disease Special Report and supported the AANEM in the development of a Continuing Medical Education Course through their on-line testing platform and also hosted a CMT symposium at their annual meeting.”

“Professional Services related to design and program consulting fees.”

“Penny adjustment to balance between financial system calculations”