In support for my journey to find a cure for FSHD (Facioscapulohumeral muscular dystrophy) a series of governmental proclamations were declared to help raise awareness about the disease. We are grateful to Governor JB Pritzker who kicked off things on behalf of the State of Illinois. Those were followed by both Illinois House and Senate proclamations. Capping it off were proclamations from Lake County and my hometown of North Barrington, spearheaded by my friend and Village President Eleanor Sweet McDonnell.
It’s been a magical journey of advocacy to help others in the entire state of Illinois and beyond. To honor, celebrate and create awareness for June 20th, World FSHD Day, four major Chicago buildings flipped orange in support. The John Hancock, Blue Cross/Blue Shield, the Prudential, & Tribune Tower were awash in orange light to create a ray of hope for the FSHD community.
Earlier this year a “Fido Fights FSHD” campaign kicked off in Palm Springs, CA to raise awareness of this rare, genetic muscular dystrophy that affects about one million people worldwide. Locally, we hosted the first ever “Yappy Hour” The Club of Wynstone with 155 attendees and 45 well behaved dogs. It was an evening of fun, friendship and creating awareness with all things “orange,” including doggie giveaways, lite bites, dog-shaped cookies, and Aperol Spritz cocktails.
For the annual Barrington Fourth of July Parade more than 35 local supporters marched alongside a classic ‘57 Chevy handing out bandanas to spectators helping build momentum for the upcoming Chicagoland FSHD Walk to be held at Citizen’s Park in Barrington on September 13.
Please join my team – “Joanne’s Warriors” – to support the fight and rally for a cure.
To learn more visit Give.FSHDSociety.org/team/658263 or send an email to joanne@fshd-cure.org.