Page 7 - 2020 Winter CMTA Report
P. 7

NIH AWARDS INHERITED NEUROPATHIES


      CONSORTIUM $7.2 MILLION IN RENEWED


      FUNDING FOR WORK ON CMT




         he National                           and led by NIH’s
         Institutes of                         National Center for
      T Health granted                         Advancing Translational
      the Inherited                            Sciences (NCATS) and
      Neuropathies                             the NCATS Office of
      Consortium (INC)                         Rare Diseases Research.
      $7.2 million in                          The RDCRN grants
      renewed funding in                       aim to foster collabora-  forms of inherited peripheral neu-
      October 2019 for                         tive research among     ropathies. We will also be able to
      continued clinical                       scientists to better    continue our efforts to identify
      research on different                    understand how rare     novel genetic causes of CMT and
      forms of inherited  CMT Board Member     diseases progress and   continue to train the next genera-
                          Dr. Michael Shy leads the
      peripheral                               to develop improved     tion of young investigators in
                          Inherited Neuropathies
      neuropathies and    Consortium (INC), which is  approaches for diagnosis  our field.”
      improving the care   part of the Rare Diseases   and treatment.     In addition to seeking new and
                          Clinical Research Network
      of patients.                                 According to Shy,   better treatments for patients with
          Led by University                    professor of neurology  inherited neuropathies, the consor-
      of Iowa neurologist and CMTA    and director of the CMT Clinic at  tium also provides up-to-date
      Board Member Michael Shy, MD,   the University of Iowa Hospitals &  information to help patients man-
      the INC is part of the Rare Dis-  Clinics, the funding means that  age their diseases and assists in
      eases Clinical Research Network  Iowa will remain at the forefront of  connecting patients with support
      (RDCRN), a group of 20 teams of  research in the field of inherited  groups, expert doctors and clinical
      scientists, clinicians, patients, fami-  peripheral neuropathies. “We will  research opportunities.
      lies and patient advocates that  continue to pioneer natural history  While INC is primarily
      study a wide range of rare diseases.  studies and develop clinical and  funded by NIH, the CMTA and
      The RDCRN is supported by mul-  biomarker outcome instruments    the Muscular Dystrophy Associa-
      tiple NIH Institutes and Centers  for patients with multiple genetic  tion also provide support. h




         CMTA WELCOMES NEW BOARD MEMBER


           anker David Coldiron joined the CMTA Board of Directors in
         B2019, bringing almost two decades of business experience with him.
         Currently the director of mortgage lending at Legends Bank, Dave
         and his wife, Christina, live in Nashville with their two daughters.
             “Our daughter, Hazel, was diagnosed with CMT in November
         2015, Coldiron said, adding, “Christina and I were so fortunate to find
         the CMTA, which has provided us with medical contacts and welcomed
         us into their caring community. It is an honor to join a team that is
         doing so much to support those impacted by CMT as well as leading
         the charge for development of treatments.”
             CMTA Board Chair Gilles Bouchard said of Coldiron’s appoint-
         ment, “We are all looking forward to working with Dave on behalf of
         all CMT patients during these exciting times for our organization.”



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