Your experience with LGMD2A/R1 and LGMDD4 is a powerful tool for connection and understanding. By sharing your story, you can offer support to others navigating a diagnosis and increase understanding among the public, researchers, and medical professionals about the realities of living with calpainopathy.

How to Share Your Story

You can use the form below to submit your story. Our team will review your submission and may contact you with any questions before sharing on our Patient Stories page.

Guiding Questions

If you need help getting started, consider including some of the following in your submission:

  • What is your connection to LGMD2A/R1 or LGMDD4?
  • Can you describe your diagnostic journey?
  • How has living with calpainopathy impacted your life and the lives of your family?
  • What are your challenges, and what are your triumphs?
  • What message of hope or advice would you share with others in the community?

Submit Your Story

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