C3 is Putting LGMD on the Map!

Coalition to Cure Calpain 3 is putting limb-girdle muscular dystrophy type 2A (LGMD2A/R1) on the map! In celebration of ten years of progress in our mission to fund research for a cure and raise global awareness, C3 is proud to be sharing in the coming weeks ten highlights of our momentum. This week, Highlight #2 is the incredible progress we’ve made raising awareness of LGMD and building our patient community.

The very essence of C3’s mission is to raise LGMD2A/R1 as a worthy and important disease target for stakeholders, including scientists, doctors, and companies. LGMD2A/R1, also known as calpainopathy, is a rare genetic disease that leads to muscle wasting due to a defective calpain 3 gene. Patients are born with the disease, but onset varies from person to person. Typically, the earlier the onset of the disease, the more severe the symptoms over time. There is no treatment or cure, and patients often struggle even getting a proper diagnosis. 

C3 was founded ten years ago by Kristine Kurnit and Michele Wrubel, two women living with LGMD2A/R1 who were frustrated at the lack of attention paid to the disease. The culmination of our efforts over that time has raised awareness in the scientific, medical, and patient communities.

• Working with a consortium of other foundations, we coordinate a worldwide LGMD Awareness Day that has been celebrated each September 30th for the past six years.

• We have successfully connected with patients, caregivers, families, and partners at peer organizations. Leading that effort, Carol Abraham, Director of Community Outreach, keeps C3 visible to build awareness through social media and building relationships with patient groups

• C3 continues to build a network of interested stakeholders. Mrs. Abraham is founder of the LGMD Awareness Foundation, Inc., of which C3 is a member organization. We have united with groups representing other LGMD subtypes to globally raise awareness of LGMD and provide curated educational information to the public. 

• C3 is a vital source of news, information, and advances for the LGMD2A community. Our News page is frequently updated. Scroll down to the “Subscribe” button on the right hand side of this webpage.

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 sub-type 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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