Joanne Dalessandro has been busy!

by Chelsea Moeller, Development Director – FSHD Society

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Retiree Joanne Dalessandro has been busy – busier than she ever was during her 50-year career in sales. Between weekly medical appointments, fitness classes, and FSHD advocacy and fundraising efforts, she’s booked solid! 

It took 10 years of living with gait impairment for Joanne to be diagnosed with FSHD. When she finally was in 2023, she cycled through a whirlwind of emotions: confusion (What is this?), anger (Why did it take so long to figure out?), fear (What happens now?), and finally, determination: I’m not giving into this. 

She attended the FSHD Society’s Connect conference in 2024 and dove headlong into advocacy and fundraising after. And she hasn’t stopped since. 

In 2024, Joanne set a high bar for herself, raising $112,000 with her Walk & Roll team, Joanne’s Warriors. They were the highest fundraising and largest team in the nation. With that success behind her, she set her sights even higher for 2025, expanding her efforts to raise awareness and her hopes to raise even more money. 

So, what has she been up to? Securing proclamations, launching her “Fido Fights FSHD” awareness campaign, marching in parades and much, much more! 

Proclamations and Resolutions 

Joanne knows how to use her network for good, and she did so to secure World FSHD Day Proclamations in both the Village of North Barrington and Lake County, her home for the past four decades, and in the state of Illinois at large. On May 27th, Governor JB Pritzker personally presented her with the signed proclamation. Documents like these are more than symbolic gestures; they embed FSHD into the official record, raising awareness not only at the moment they are issued but also serving as enduring tools for future advocacy. Whether pushing for new policies or increased funding, proclamations like these can be cited to demonstrate public and governmental recognition of the disease.  

Not one to miss an opportunity to educate, Joanne provided all 180 legislators present that day with a packet of information on FSHD and an orange “Fido Fights FSHD” bandana. 

Fido Fights FSHD Campaign 

Her “Fido Fights FSHD” campaign holds multiple meanings. First, Joanne’s own sidekick, Mavrik, brings her great joy when many of her joys have been taken by FSHD. She can no longer golf or garden like she used to, but Mavrik helps heal some of the emotional pain from those losses. “He gives me comfort, joy and giggles,” she says. “And people relate with their pets. Because FSHD is rare and people don’t understand it, it’s easier to start with the common denominator – our dogs – and then share about the ‘why’ of the orange bandana.” 

To date, Joanne has distributed more than 2500 bandanas across several states, each time with an informational postcard encouraging recipients to post a photo of their dog wearing their new swag on social media. 

Taking the common dog-nominator to another level, Joanne hosted “Yappy Hour” this past June. One hundred and fifty-five people and 45 dogs attended on a steamy Tuesday evening, snacking on orange-themed treats and orange Aperol spritzes and learning more about FSHD and Joanne’s personal journey. Attendees had the opportunity to sign up to walk in the Barrington 4th of July Parade with their pups to further raise FSHD awareness and to join the Chicagoland Walk & Roll on September 13. 

 

And that’s not all! 

In addition, Joanne was recently featured in a “Spotlight on Chicago” segment alongside FSHD Society CEO, Mark Stone, and she was instrumental in getting five Chicago-area buildings lit in orange to honor World FSHD day in June.  

Most recently, her story was shared in a Daily Herald article, detailing her experience, defining FSHD for recipients and doubling down on her determination to make a difference in the FSHD arena.  

Like everyone living with FSHD, Joanne yearns for the day a meaningful treatment becomes available, and she’s determined to do her part in accelerating that timeline. She credits her success to date – in both awareness and fund raising – to her work experience, persistence, and personal drive. 

“I get involved in the things I care about,” she says. “I’m used to being busy and I like a challenge. I want people to know what these four letters – FSHD – mean, and I want a cure.”