LGMD Awareness Foundation, Inc. is a 501(c)(3) non-profit advocacy organization dedicated to globally raising awareness of the rare neuromuscular diseases known as limb-girdle muscular dystrophy (LGMD). In collaboration with other LGMD foundations, our focus is to provide curated educational information and resources for the LGMD community and public.

By increasing awareness of and advocating for individuals living with limb-girdle muscular dystrophy, we hope individuals living with this progressive debilitating disease will have an easier time accessing diagnosis, care and treatment.

We also coordinate a worldwide Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day annually on Sept. 30.

LGMD Awareness Foundation, Inc. (EIN: 85-1504937) is a 501 (c)(3) tax-exempt public charity. As such, all donations are fully tax deductible.

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Board of Directors

Laf Board Members (3)

Carol Abraham, President/Treasurer

  • Founder of LGMD Awareness Day

  • Co-Chairperson for the International Limb-Girdle Muscular Dystrophy Conference

  • B.S. from Mount Mary University

  • Former Registered Occupational Therapist (OTR)

  • Decades of being an advocate for individuals with disabilities

  • Diagnosed with LGMD2A/R1 Calpain 3-related

Laf Board Members Karen (2)

Karen Cole, Vice President

  • “Lime Green for LGMD” Campaign Coordinator

  • B.S. from Northern Illinois University

  • Former Elementary Teacher and Religious Education Coordinator

  • Dedicated LGMD Patient Advocate

  • Diagnosed with LGMD2i/R9 Dystroglycan-related

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Yumi Shim, Secretary

  • Diagnosed with LGMD2B/R2 Dysferlin-related

  • BA from the University of Michigan
  • Entrepreneur and business owner in the consumer products industry
  • LGMD patient advocate, conference panelist
  • Passionate about building awareness in elementary classrooms, especially around LGMD Awareness Day
Laf Board Members Rebecca

Rebecca Gregg, Director of Marketing

  • B.A. from University of Central Oklahoma

  • Decades of public relations and marketing experience in the health care and non-profit fields.

  • Dedicated LGMD Patient Advocate

  • Diagnosed with LGMD2B/R2 Dysferlin-related

LGMD Awareness Day

Limb-Girdle Muscular Dystrophy Awareness Day, which is celebrated annually worldwide on September 30th, is a project of the LGMD Awareness Foundation, Inc. The first annual LGMD Awareness Day was celebrated in 2015 and was founded by Carol Abraham, who lives with LGMD2A/R1 Calpain 3-related.

LGMD Advisory Board

Kelly Brazzo
Cure LGMD2i Foundation (LGMD 2I/R9)

Rachel DeConti
LGMD2D Foundation (LGMD 2D/R3)

Sarah Emmons
Jain Foundation (LGMD 2B/R2)

Kent Frewing
Kurt+Peter Foundation (LGMD 2C/R5)

Scott Frewing
Kurt+Peter Foundation (LGMD 2C/R5)

Jean-Pierre Laurent
LGMD2i Fund (LGMD 2I/R9)

Aleksandra Leijenhorst
Stichting Spierkracht (LGMD 2D/R3)

Jennifer Levy
Coalition to Cure Calpain 3 (LGMD 2A/R1)

William Lowery
LGMD-1D DNAJB6 Foundation (LGMD 1D/D1)

Jane McColl Lockwood
McColl-Lockwood Laboratory for MD Research (LGMD 2I/R9)

Brad Williams
Jain Foundation (LGMD 2B/R2)

Other Foundation Information

LGMD Awareness Foundation, Inc. is a proud member of TREAT-NMD.

Our Advocacy Partners