About Us

LGMD Awareness Day Toolkit

The LGMD Awareness Foundation is on a mission to shine a global spotlight on limb-girdle muscular dystrophy (LGMD) and champion the cause for improved access to diagnosis, care, and treatment for those living with this condition. As we celebrate a decade of progress, we will be rolling out an Awareness Day Toolkit in spring of 2024, designed to empower and engage our community in advocacy like never before.

LGMD Awareness Day Toolkit

Spotlights

Explore our ‘Spotlights’ section, where we shine a light on the inspiring stories and invaluable contributions of individuals with LGMD, their dedicated caregivers, supporting organizations, and the clinicians who support them.

The LGMD Awareness Foundation, Inc. is a 501(c)(3) non-profit advocacy organization committed to raising global awareness about limb-girdle muscular dystrophy (LGMD), a group of rare and often debilitating neuromuscular diseases. Our mission is strengthened through collaborative efforts with other LGMD foundations, as we unite to provide curated educational resources and support for both the LGMD community and the public.

By amplifying awareness and advocating for those impacted by LGMD, we strive to ensure that individuals facing this progressive condition can more easily navigate the pathways to diagnosis, care, and treatment. A significant highlight of our advocacy is the annual Limb-Girdle Muscular Dystrophy Awareness Day, celebrated on September 30th, which serves as a vital platform for spreading knowledge and fostering community engagement.

Together, we can make a difference in the lives of those affected by LGMD, and we encourage everyone to join us in this important cause.

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

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

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

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

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 is a collaborative effort to globally raise awareness of the rare neuromuscular diseases known as Limb Girdle Muscular Dystrophy (LGMD) and to draw attention to this group of rare diseases which impacts the lives of many children and adults. Limb Girdle Muscular Dystrophy Awareness Day is celebrated and acknowledged annually on September 30th worldwide. Through our website and various social media outlets, our LGMD advocacy efforts have an expansive reach and influence throughout the year. Our focus is to provide curated educational information and resources for the LGMD community and public through our website, social media and at various LGMD related events.

The first annual LGMD Awareness Day was celebrated in 2015 and was founded by Carol Abraham, who lives with LGMD2A/R1 Calpain 3-related.