{"id":87,"date":"2019-12-30T21:34:46","date_gmt":"2019-12-30T21:34:46","guid":{"rendered":"http:\/\/lgmd1d.org\/lgmdwp\/?page_id=87"},"modified":"2026-03-05T11:23:23","modified_gmt":"2026-03-05T19:23:23","slug":"myosynd-your-myopathy-syndicate-and-medical-action-committee-autosomal-dominant-and-x-linked-muscle-disorders","status":"publish","type":"page","link":"https:\/\/lgmd1d.org\/lgmdwp\/","title":{"rendered":"LGMD1D Foundation and Autosomal Dominant Registry: A 501 (c)(3) Charity Fed Tax ID: 82-4380557"},"content":{"rendered":"

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Mission Statement:<\/strong><\/h3>\n

\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0<\/span><\/strong><\/h3>\n

\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0Autosomal dominant LGMD is a small subset of\u00a0 muscular dystrophies but share a common pathway to a cure through gene therapy.\u00a0 Our mission is to provide organization through a clinical registry for those patients.<\/span><\/strong><\/h4>\n
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Our Privacy Policy:\u200b\u200b
\n<\/span><\/strong><\/h3>\n


\nThe LGMD-1D DNAJB6 Foundation does not share personal information.\u00a0 We do not track or profile you.\u00a0 The Foundation is strongly committed to protecting the privacy of its user community and is dedicated to ensure that your information cannot be be linked back to you.\u00a0 Your participation in this registry will be kept confidential and your contact with outside researchers and orginizations interested in your personal data will only be initiated by you and only you personally contacting the interested person or agency.\u00a0 We follow the US HIPAA and European GDPR guidelines for registrants’ data protection.\u00a0 As a voluntary registry this is a non binding agreement\u00a0and registrants can opt out at any time by contacting our email:\u00a0<\/span><\/strong><\/h4>\n

wslowery.57@lgmd1d.org\u00a0<\/span><\/strong><\/h4>\n<\/div>\n

\u200b<\/strong><\/h3>\n

\u200bWilliam S. Lowery MD<\/span><\/strong><\/h2>\n

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Important Links:<\/strong><\/h1>\n

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Zoom Appointments with Dr Lowery HERE<\/a><\/span>.(no charge, HIPAA compliant)<\/strong><\/h1>\n

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No cost muscular dystrophy genetic testing<\/b> HERE<\/span><\/b><\/a>.<\/span><\/h1>\n

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Autosomal dominant individuals register <\/b>HERE<\/b><\/span>.<\/b><\/a><\/h1>\n

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Support persons, friends and activists register at MYOSYND: HERE<\/a><\/span>.<\/b><\/h1>\n

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Sponsored whole genome sequencing (if gene panel tests are VUS): Stanford<\/span><\/a>, Harvard<\/span><\/a>.<\/strong><\/h1>\n

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Connect with an MDA clinic HERE<\/a><\/span>.<\/strong><\/h1>\n

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Connect with our Chat GPT for LGMD Answers HERE<\/span><\/a>.<\/strong><\/h1>\n

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 <\/p>\n","protected":false},"excerpt":{"rendered":"

Mission Statement: \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0Autosomal dominant LGMD is a small subset of\u00a0 muscular dystrophies but share a common pathway to a cure through gene therapy.\u00a0 Our mission is to provide organization through a clinical registry for those patients. Our Privacy Policy:\u200b\u200b The LGMD-1D DNAJB6 Foundation does not share personal information.\u00a0 We do not track or profile you.\u00a0 The Foundation is strongly committed to protecting the privacy of its user community and is dedicated to ensure that your information cannot be be linked back to you.\u00a0 Your participation in this registry will be kept confidential and your contact with outside researchers and orginizations interested in your personal data will only be initiated by you and only you personally contacting the interested person or agency.\u00a0 We follow the US HIPAA and European GDPR guidelines for registrants’ data protection.\u00a0 As a voluntary registry this is a non binding agreement\u00a0and registrants can opt out at any time by contacting our email:\u00a0 wslowery.57@lgmd1d.org\u00a0 \u200b \u200bWilliam S. Lowery MD   Important Links:   Zoom Appointments with Dr Lowery HERE.(no charge, HIPAA compliant)  …<\/p>\n

Continue readingLGMD1D Foundation and Autosomal Dominant Registry: A 501 (c)(3) Charity Fed Tax ID: 82-4380557<\/span><\/a><\/div>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-87","page","type-page","status-publish","hentry","entry"],"yoast_head":"\nLGMD1D Foundation and Autosomal Dominant Registry: A 501 (c)(3) Charity Fed Tax ID: 82-4380557 - % %<\/title>\n<meta name=\"description\" content=\"Registry for all autosomal muscular dystrophy and X linked muscular dystrophy\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lgmd1d.org\/lgmdwp\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD1D Foundation and Autosomal Dominant Registry: A 501 (c)(3) Charity Fed Tax ID: 82-4380557 - 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