C3 is connecting patients with one another!

Coalition to Cure Calpain 3 is a vital hub connecting patients with limb-girdle muscular dystrophy type 2A (LGMD2A/R1) with one another. In celebration of ten years of progress in our mission to fund research for a cure and raise global awareness, this week, number four in our top ten highlights is: connecting the LGMD2A/R1 community to help patients navigate the challenges inherent in a rare disease.

As a rare disease, LGMD2A/R1 occurs in about 1 in 100,000 people. Patients are unlikely to run across anyone outside of their family with the same diagnosis. C3 has harnessed the power of social media to bring together LGMD2A/R1 patients and their families through the “C3 COMMUNITY” FACEBOOK GROUP. Our goal is that no one with LGMD2A/R1 should feel alone in dealing with this rare disease.

C3 has become the glue for our community – a first point of entry to meet others with the disease. Our efforts have connected nearly 1,000 people from around the world through this private Facebook group. All LGMD2A/R1 patients and family members are welcome to join this private group. CLICK HERE TO REQUEST TO JOIN! (An active Facebook account is required.) 

C3 posts relevant science advances and up-to-date news. We share “hacks” for living with the disease, support one another, and help with the frustrations of living with LGMD2A/R1.

C3 also helps members to meet in person. Last year, we were delighted to connect many in our community face-to-face at the National LGMD Conference in Chicago. We anticipate convening again when travel can safely resume.

To continue this important work, we need your help.C3 has a pinpoint focus: to drive research for an LGMD2A/R1 cure. Every dollar counts to help grow support and research for this overlooked subtype of muscular dystrophy.

Please donate now so that we can continue our strong momentum. Through your generous financial support we can do even more in the next 10 years to change the lives of patients in need.

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