The most relevant news and events about LGMD2I and other LGMDs and MDs.
We invite you to share news or events to be added to these pages by sending us an email with the subject line “News&Events”.
Nebula Genomics: A Start up to sequence you genome for free
Nebula wants to sequence your whole genome (=3.2 billion base-pairs), not just some specific DNA markers (50 million base-pairs=1.5% of genome), which is what ancestry and genomic companies do. Sequencing the whole genome will allow the detection of all the potentially pathogenic genomic variations. Importantly, Nebula will provide the genome sequence for free, and the data will belong to you. You may decide to authorize Nebula to share your genome’s sequence with researchers and drug developers for monetary compensation.
The Dystroglycanopathies: Patient and Family Conference
Yearly (summertime with announcement available at the end of May) in Iowa City
This annual conference is organized by the Wellstone Muscular Dystrophy Cooperative Research Center in Iowa City. It is focused on Dystroglycanopathies, which include LGMD2I. Many in the LGMD2I community meet during this conference that provides an overview on latest scientific discoveries and Q&A sessions on Living with MD, on Medical care, and Public Policy as well as a teen/tween exclusive session.
The conference provides financial help for travel expenses.
The contact person is Carrie Stephan, [email protected].