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Myotubular Myopathy Resource Group
www.mtmrg.org
information about MTM and CNM, including family stories/photos.
Posted November 8, 2008 at 7:58 AM
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Joshua Frase Foundation
www.joshuafrase.org
information about MTM and CNM, familiy stories/photos, links to research enrollment, information on fundraising for research, memorials,
Posted November 8, 2008 at 8:02 AM
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Phillips Respironics
www.healthcare.philips.com/main/homehealth/respironics.wpd
Phillips Respironics sponsored the 2011 MTM-CNM Family Conference in Minneapolis, MN.
Posted August 9, 2011 at 10:31 PM
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Myotubular Trust
www.myotubulartrust.org
information about MTM and CNM, research, fundraising opportunities and ideas
Posted November 8, 2008 at 8:04 AM
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The Information Point for Centronuclear and Myotubular Myopathy
www.centronuclear.org.uk
information about MTM and CNM, links to other MTM and CNM organizations, patient registry, research, memorials, online store,.
Posted November 8, 2008 at 8:39 AM
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Beggs Laboratory at Children's Hospital Boston
www.childrenshospital.org/cfapps/research/data_admin/Site1694/mainpageS1694P0.html
Research lab in the US currently enrolling patients/families into their research project.
Posted November 11, 2008 at 1:37 PM
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Jacob Berry Ministries
www.jacobberryministries.org
Jacob Berry is a special young man, born with Myotubular Myopathy, who is on a special mission from God to preach His word throughout the land. This is his ministry webpage.
Posted January 19, 2009 at 7:49 PM
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The story of Nibs.
www.joshuafrase.org/PDFs/Nibs.pdf
Information about our miracle dog, Nibs...brought to you from the Joshua Frase Foundation.
Posted July 30, 2011 at 4:21 PM
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