
At Shared Light Project – YANA, we’re all about shining a light on rare diseases and mobility challenges because awareness leads to understanding, and understanding builds stronger support for one another. ![]()
Today, we’re putting a spotlight on Limb-Girdle Muscular Dystrophy Type 2I (LGMD2I), a rare, inherited condition that gradually weakens the muscles around the hips, shoulders, and eventually the lungs and heart.
It’s caused by mutations in the FKRP gene, which affects how our muscle cells hold together and repair. People living with LGMD2I may notice difficulty walking, climbing stairs, or raising arms, and over time, many require mobility aids or ventilatory support.
What’s hopeful? Research is actively underway!
Clinical trials are exploring gene therapies and small molecule treatments that could slow or even stop the disease from progressing. AI is also helping scientists speed up this process, from drug discovery to personalized care. ![]()
If you or someone you love is navigating life with LGMD2I or any rare disease, know that you are not alone.
We’d love for you to share your story in the comments, or just say hello. You belong here.



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