#Whistle4FSH has one goal—to find treatments for FSHD, the most prevalent type of muscular dystrophy, caused by a genetic mutation on chromosome 4. People with FSHD can not only lose the ability to walk, do simple tasks, or blink, but also be robbed of the ability to whistle or smile. WHISTLE FOR THOSE WHO CANNOT WHISTLE THEMSELVES. We know you want to make a treatment a reality too—so #Whistle4FSH by:
- RECORD: Take a video of yourself or group whistling a few refrains from your favorite song to increase public awareness of FSHD;
- UPLOAD: Upload your video to social media, tagging at least four (4) family/ friends to engage and grow the message (#Whistle4FSH);
- GIVE: Make a Donation to support Susan Barclay’s 50th Birthday Research Fundraiser;
- IT’S EASY – wet your whistle. video. post. tag. #Whistle4FSH
The Story
As Susan reflected on the next major milestone in her life, turning 50, her friend challenged her to “think of something you have always been afraid of doing and do it…just something crazy.”
So here it goes—Susan has FSHD. She is reserved and discreet about sharing her personal journey with FSHD and the barriers she has broken. Even though she is faced with overwhelming daily obstacles, she prevails and overcomes without complaint, staying her usual course and always overcoming the biggest obstacles gracefully thanks to her phenomenal positive attitude and support team.
Consequently, Susan wants to recognize her amazing family, friends, and healthcare professionals who keep her winning. She felt inspired to show them as much support as they have given her. The current FSHD clinical trials are racing closer to treatments and a cure. We need to work as one NOW to bring attention and support to those living with FSHD. Susan has decided to use this milestone birthday as a catalyst for the cause.
So again to thank everyone who dedicates themselves to caring for FSHD patients and collaborates to discover treatments and a cure, Susan is launching #Whistle4FSH (as Susan is a music enthusiast—highlights being her David Bowie wallpapered dorm room and her summers following the Grateful Dead) to promote awareness and raise $50,000 for FSHD research initiatives as her 50th Birthday challenge. #Whistle4FSH and DONATE!
Special thanks and recognition to:
Chris Vlasto – birthday challenger
Michelle Marquardt – social media maniac
James Williamson – video guru
Tresa Veitia – editing wizard
Margaux Harrold – jack of all trades – “go to girl”
Lindsay Freeman – “count me in” graphic designer
The Barclay Family – who adore the “morning Susan”
Mom – the incessant whistler
Catherine Brink, Debbie Ludwig, Ela Lewis & Linda Mann – promoters
Extra special shout out to my doctors, care providers, and researchers who have dedicated themselves to finding treatments for FSHD.
Links:
- Dr. Kew Jung John Lee
- Dr. Robert Griggs
- Dr. Rabi Tawil
- Dr. Shree Pandya
- Dr. Alberto Esquenazi
- Dr. Joanne C. Smith
- Dr. Henry Betts
- Donald McGovern CPO, FAAOP
- Elizabeth Gaffron OT
- Dr. Joel M. Press
- Dr. Elliot J. Roth
- Dr. Jeffery Statland
Be inspired!
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