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Cure SPG47, Inc.

  • Non Profit Organizations
24R Pleasant Street
Newburyport, MA 01950
(617) 549-8575
(617) 674-2480 (fax)

About Us

Non-profit organization dedicated to finding a cure for Hereditary Spastic Paraplegia SPG47.Hereditary Spastic Paraplegia, type 47, otherwise known as ''SPG47'', is an ultra-rare neurodegenerative read more
  • About

    Non-profit organization dedicated to finding a cure for Hereditary Spastic Paraplegia SPG47.Hereditary Spastic Paraplegia, type 47, otherwise known as ''SPG47'', is an ultra-rare neurodegenerative disease. Children afflicted with this genetic disorder generally present with symptoms including global developmental delay, microcephaly, seizures, malformation of the brain, and hypotonia (low-muscle tone). They often learn to walk between the ages of 2-2½. They tend to lose that ability a few months or a few years later as they develop hypertonia (high-muscle tone) and muscle spasticity. Of the 11 confirmed cases of SPG47 in the world at this time, the first 9 patients have progressed to loss of mobility in some or all extremities, and are severely intellectually challenged.

    Because of the extreme rarity of SPG47, very little research has been conducted to date, and there is no known cure.

    The Cure SPG47 non-profit organization was founded in 2016 by families of two of the eleven known patients. We refuse to accept the bleak prognosis which our children face. We have decided to fight. The purpose of this organization is to study and seek a cure for SPG47. We aim to improve the quality of life for children impacted by SPG47 by accelerating the research for a cure or treatment and providing financial support for patient therapies critical to their well-being and rehabilitation.

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  • Whom to Contact

    • Mr. Chris Edwards
      President
      24R Pleasant St, Unit 2
      Newburyport, MA 01950
      Phone: (617) 549-8575
      Fax: (617) 674-2480
    • Ms. Kasey Edwards
      24R Pleasant Street
      Newburyport, MA 01950
      Phone: (617) 549-8575
      Fax: (617) 674-2480