Patrick was an accomplished athlete in high school, participating in many sports and even boasting a 85mph fastball. But his deformed feet prevented him from running, eliminating any chance to pursue sports past high school.
Author Archive
Allison Moore
Every Voice Makes A Difference: Social Media Awareness For Charcot-Marie-Tooth Disease
it’s so important for you to join The Hereditary Neuropathy Foundation on all of our social media channels.
My 50th Birthday Wish: A Special Message From HNF Founder Allison Moore
I knew the only way I was going to have a fighting chance against this still unknown disease was to give CMT a voice.
New Strategic Alliance with Rare Disease Report (RDR)
We are excited to announce our new collaboration with Rare Disease Report (RDR) to increase awareness of Charcot-Marie-Tooth (CMT) among the medical community. RDR’s website, e-newsletter, and print publication offers an independent voice for the Rare Disease Community.
Accelerating Patient Access to Investigational Drugs in 2015
Currently the FDA is working to update the process for physicians applying for accelerated patient access to investigational drugs, while the drug or biological product is being tested in clinical trials. This will also be important for the CMT community as clinical trials for this disease are being launched.
Finding Experts Health Care Providers for Charcot-Marie-Tooth
We are creating an innovative HCP Directory which provides these clinicians with additional tools to care for their patients.
Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.
As Chief Science Officer of HNF, it is his responsibility to oversee the success of our TRIAD research program in which we fund translational research (pre-clinical and clinical), projects. HNF’s goal is to expedite the research process from bench to bedside.
Quality of Life and CMT Research
Did you know that 95% of clinical trials fail? There are multiple causes, most related to efficacy or safety, which obviously can be harmful and risky for patients. The risk-reward of enrolling in trials is a judgment call based on the devastating effects of disease related to quality of life (QoL) or life-threatening disease. With CMT, the risk-reward is more of a challenging question for many, as CMT in most cases is non-fatal.
Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.
Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.
Global Registry for Inherited Neuropathy (GRIN) Vs the Rare Disease Clinical Research Network (RDCRN)
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical...
HNF and Wave Skater form a Partnership
I (Allison Moore) is amazed how life moves in such wondrous ways. My family has the good fortune to spend summers at a beautiful Long Island beach where my husband and boys enjoy riding the waves on boogie boards.
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