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 around the world.
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. Download our IRS determination letter here.
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 LGMD 2A / R1 Calpain 3-related
Karen Cole, Vice President
- “Lime Green for LGMD” Campaign Coordinator
- B.S. from Northern Illinois University
- Former Elementary Teacher and Religous Education Coordinator
- Dedicated LGMD Patient Advocate
- Diagnosed with LGMD 2i / R9 Dystroglycan-related
Michele Wrubel, Secretary
- Co-founder of Coalition to Cure Calpain 3 in 2010
- B.S. from University of Rhode Island, summa cum laude
- Decades of non-profit experience in leadership positions
- Formerly a media supervisor at Ammirati & Puris/Lintas
- Diagnosed with LGMD 2A / R1 Calpain 3-related
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 LGMD 2B / 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.
LGMD ADVISORY BOARD
Kelly Brazzo
Cure LGMD2i Foundation (LGMD 2I/R9)
Rachel DeConti
LGMD2D Foundation (LGMD 2D/R3)
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))
Sarah Shira
Jain Foundation (LGMD 2B/R2)
Brad Williams
Jain Foundation (LGMD 2B/R2)
