LGMD Awareness Day was founded by Carol Abraham, who has lived with LGMD since childhood. For so many years, she wished there was more awareness of LGMD – within the general public and also within the medical community. Through collaboration with a variety of LGMD foundations, Carol began plans to organize the first LGMD Awareness Day which was celebrated worldwide on September 30, 2015.
LGMD Awareness Day has become an annual collaborative effort to educate the public and unite the LGMD community while also raising awareness of the many individuals living with Limb Girdle Muscular Dystrophy worldwide. The fifth annual global “Limb Girdle Muscular Dystrophy Awareness Day” will be held on September 30th, 2019.
Currently, the LgmdDay Planning Team consists of:
• Carol Abraham — Coalition to Cure Calpain 3 (LGMD2A)
• Jennifer Levy — Coalition to Cure Calpain 3 (LGMD2A)
• Michele Wrubel – Coalition to Cure Calpain 3 (LGMD2A)
• Kelly Brazzo – Cure LGMD2i Foundation (LGMD2i)
• Brad Williams – Jain Foundation (LGMD2B)
• Sarah Shira – Jain Foundation (LGMD2B)
• Scott Frewing – Kurt+Peter Foundation (LGMD2c)
• Kent Frewing – Kurt+Peter Foundation (LGMD2c)
• Bryan Barber – LGMD2d Foundation (LGMD2D)
• Jean-Pierre Laurent – LGMD2i Fund (LGMD2i)
• Ralph Yaniz – LGMD2L Foundation (LGMD2L)
• Jane McColl Lockwood – McColl-Lockwood Laboratory for MD Research (LGMD2i)
• Lianna Orlando – Muscular Dystrophy Association
• Kathryn Bryant – The Speak Foundation
• Karen Cole – Patient Advocate (LGMD2i)
The Lgmd Day Planning Team welcomes any suggestions or initiatives that you can recommend to help raise awareness of limb girdle muscular dystrophy (LGMD).
To volunteer or submit ideas, please contact us via e-mail at lgmd.day@gmail.com
