Mission Statement:
Autosomal dominant LGMD is a small subset of muscular dystrophies but share a common pathway to a cure through gene therapy. Our mission is to provide organization through a clinical registry for those patients.
Our Privacy Policy:
The LGMD-1D DNAJB6 Foundation does not share personal information. We do not track or profile you. 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. 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. We follow the US HIPAA and European GDPR guidelines for registrants’ data protection. As a voluntary registry this is a non binding agreement and registrants can opt out at any time by contacting our email:
wslowery.57@lgmd1d.org
William S. Lowery MD
Important Links:
Zoom Appointments with Dr Lowery HERE.(no charge, HIPAA compliant)
No cost muscular dystrophy genetic testing HERE.
Autosomal dominant individuals register HERE.
Support persons, friends and activists register at MYOSYND: HERE.
Sponsored whole genome sequencing (if gene panel tests are VUS): Stanford, Harvard.
Connect with an MDA clinic HERE.
Connect with our Chat GPT for LGMD Answers HERE.
