What does LGMD Awareness Day mean to me?
This year’s LGMD awareness day is an exciting and very important event! I’d like to take some time to express just how crucial this day of awareness is to each one us living with LGMD. September 30th is not just a date on the calendar anymore. It stands as a beacon of hope and unity. The LGMD community is announcing to the world that we are not alone as patients with LGMD, as caregivers of patients with LGMD, and that we are not alone as fellow citizens of the world.
Embracing each other and unifying under the LGMD umbrella, regardless of your subtype, is such a critical step towards progress that is so desperately needed by our community. We truly are stronger together, and with the entire LGMD community helping to jointly raise awareness of this very rare set of diseases, we are sure to increase awareness and foster a sense of togetherness and hopefulness that one day (hopefully very soon) we will begin to see treatments for LGMDs. I live with LGMD 2J/R10, and like many of you reading this, I often struggle to accept this condition, to accept the long wait for treatments, and often times feel very isolated because of the rarity of my condition. LGMD’s take from us frequently, and leave us making limeade out of limes all too often, but accepting your diagnosis and truly embracing your strengths alongside your limitations will lead to great power. Embrace the “I am LGMD” spirit this year. Reach out to fellow patients, tell people about your condition, and find hope in the unity we are all striving for on this monumental day. – By John F.