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.
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.
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)
Our Advocacy Partners
