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Awareness

What’s on the Horizon for LGMD2A/R1?

What’s on the Horizon for LGMD2A/R1?

Dr. Jennifer Levy, Coalition to Cure Calpain 3 Scientific Director, is a proud contributor to the Winter 2022 issue of LGMD News. This magazine, a project of The Speak Foundation, publishes up-to-date information for the LGMD community. Dr. Levy’s article

Jennifer Levy January 11, 2022January 11, 2022 Awareness, C3 News Read more

C3 to Participate in Externally-Led PFDD Meeting with FDA

C3 to Participate in Externally-Led PFDD Meeting with FDA

If you are living with LGMD2A/R1, you will have the opportunity to participate in an externally-led Patient-Focused Drug Development Meeting (EL-PFDD) with the FDA on September 23, 2022. C3 is proud to be one of six LGMD organizations to collaborate

Jennifer Levy November 23, 2021December 6, 2021 Awareness, C3 News, Patient-focused drug development Read more

Carol Abraham appointed to Patient Engagement Collaborative

Today, the U.S. Food and Drug Administration (FDA), in collaboration with the Clinical Trials Transformation Initiative (CTTI), announced that Carol Abraham has been appointed to the Patient Engagement Collaborative (PEC) and will serve a two year term. Carol is the

Jennifer Levy November 18, 2021November 18, 2021 Awareness, C3 News Read more

A Special Message from Lionel Messi to the C3 Community

C3 is thrilled to share a special video message from soccer great Lionel Messi to promote September 30th as Limb-Girdle Muscular Dystrophy Awareness Day! CLICK HERE to donate to C3 to drive research for a cure, or text CALPAIN to

Jennifer Levy September 21, 2021September 21, 2021 Awareness, C3 News Read more

Together we are STRONGER: 7th Annual LGMD Awareness Day is coming up!

Together we are STRONGER: 7th Annual LGMD Awareness Day is coming up!

There is great strength in awareness, understanding, and unity. The LGMD community demonstrates global connectivity each year when we campaign together and gain recognition for LGMD. With over 30 different genetic types of LGMD, the act of collaborating globally makes

Jennifer Levy September 13, 2021September 13, 2021 Awareness, C3 News Read more

Help us make a big change for the LGMD Community

If you live in the US, we need your help! Coalition to Cure Calpain 3 has been working with Muscular Dystrophy Association (MDA) and other LGMD foundations to develop diagnostic codes specific to LGMD. Currently, anyone diagnosed with LGMD is

Jennifer Levy April 19, 2021April 19, 2021 Awareness, C3 News Read more

C3 Selected as Platinum Member of the National Organization for Rare Diseases

Coalition to Cure Calpain 3 (C3) has joined the National Organization for Rare Diseases (NORD) as a Platinum Member. This level of membership represents the highest level of integrity and transparency for patient advocacy organizations involved in medical research, drug

Jennifer Levy April 2, 2021April 2, 2021 Awareness, C3 News Read more

C3 is Poised to Make a Difference in the Next Ten Years and Beyond

Coalition to Cure Calpain 3 (C3) has made tremendous progress in driving research towards a cure for limb-girdle muscular dystrophy type 2A (LGMD2A/R1) and raising global disease awareness. Over the last 10 weeks of highlights, you have read all the WAYS

Jennifer Levy December 1, 2020November 30, 2020 10 Years of Progress, Awareness, C3 News Read more

C3 is Expanding the Field of LGMD2A/R1 Researchers

C3 is Expanding the Field of LGMD2A/R1 Researchers

Coalition to Cure Calpain 3 (C3) is attracting more researchers to study – and ultimately cure – limb-girdle muscular dystrophy 2A (LGMD2A/R1). We have worked tirelessly to bring more scientists, research, and dollars to focus on and unravel our understudied

Jennifer Levy November 17, 2020November 16, 2020 10 Years of Progress, Awareness, C3 News, Research Projects Read more

FDA Patient Listening Session on LGMDs held October 20, 2020

On October 20th, 2020, the LGMD community was able to meet with the FDA to share our patient experiences. This was a patient-led listening session organized by a consortium of advocacy organizations, including Coalition to Cure Calpain 3. The session

Jennifer Levy November 16, 2020November 16, 2020 Awareness, C3 News, Uncategorized Read more
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Recent Posts

  • Community Health Clinic publishes newsletter focused on LGMDs
  • New Research Alert: GRASP-001 Study
  • Upcoming Event: International LGMD Conference
  • Sarepta Community Update on LGMD Programs
  • C3 Celebrates Rare Disease Day

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