HNF’s New Accomplishments!

by | Apr 30, 2016 | 2 comments


Check out how far we’ve come since the last TD Bank Five Boro Bike Tour in 2015:

  1. Collaboration with Pharnext Biopharmaceutical: Working together on the first potential treatment for CMT1A. Announcement of the first USA site recruiting as of this week.
  1. Collaboration with Acetylon Biopharmaceutical and University of Sheffield: Translating a potential therapy for CMT2A and other mitochondrial disorders.
  1. Launch of HNF – CMT Centers of Excellence (COE): Ten COE’s have been selected to support the CMT Patient Community and launch additional clinical studies and trials in the near future.
  1. Awarded the prestigious Engagement award from Eugene Washington Patient Centered Outcomes Research Institute (PCORI): This award will partially support the first-ever Patient Centered Charcot-Marie-Tooth (CMT) Summit in New York City, bringing together all stakeholders to support future research for therapy development.
  1. Awarded National Organizations of Rare Disease Grant: Funded in part by a cooperative agreement with the FDA, this grant will support a Natural History Study for ultra-rare CMT/INs (HNPP, CMT2A with visual impairment/optic atrophy, CMT2C, LMNA mediated AD-CMT2, CMT4 (4A, 4B1, 2 & 3, 4C, 4D, 4E, 4F, 4G, 4H and 4J), CMT6, ADOA.
  1. Launch of CMT-Connect: Our CMT-Connect workshops encourage a holistic-educational and empowerment approach to improve quality of life as well as collecting data to develop evidence based clinical studies. We aim to provide an overall positive impact both physically and emotionally for patients and families living with CMT.
  1. Launch and Growth of our Health Care Provider (HCP) Directory: Our directory aims to help patients find the right healthcare provider for their unique needs and supportive referral resources for our HCPs.
  1. Expanded Global Registry for Inherited Neuropathies: Supporting our industry partners and working together to make a better future for CMT.
  1. Innovative Assay developed for CMT1A: This assay will screen for additional compounds for CMT1A as part of our Therapeutic Research In Accelerated Discovery (TRIAD) Program.
  1. Continued Global CMT Awareness: New collaborations are helping to address the disease state awareness problem among the medical community. Special Neurological Rare Disease Special Report and Rare Disease Report.

It’s been one heck of a journey so far. We couldn’t have gotten this far without your generous and continued support!

Your donations are always appreciated and 100% raised from my ride will support HNF programs. Together, today and tomorrow, we’re seeing real results for our special CMT family community!

Ride on,       


Allison and Elena at the finish festival!

Allison and Elena at the finish festival!







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  1. Lynne Tobias

    Hi Allison,
    It is wonderful to see all you have accomplished this year! We are praying about all the research. We hope it produces the help that is needed.

    • courtney

      Thank you Lynne!


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