‘I’m not going to give into this’: North Barrington woman turns adversity into action

After a decade-long search for answers to her difficulties with walking and other physical activities, Joanne Dalessandro of North Barrington learned in late 2023 she had FSHD, or facioscapulohumeral muscular dystrophy.

Her initial reaction: “What? What is that?”

The genetic disease causes progressive muscle weakness, primarily in the face, shoulders and upper arms. It’s one of the most common forms of muscular dystrophy, but many people have never heard of it.

While the disease currently has no cure or effective treatment, Dalessandro and the FSHD Society, the world’s largest research-focused patient advocacy organization for the illness, are working to change that.

“There are treatments in clinical trials right now, so it’s a really hopeful time,” said Erin Saxon, marketing director for the FSHD Society.

FSHD affects about a million people worldwide, including 40,000 in the U.S., Saxon said. It impacts mobility, hindering daily tasks.

“One day you’ll be able to wash your hair, and then the next you may not be able to,” Saxon said. “Imagine if you can’t reach your mouth to eat. That can drastically affect your life and that is something that FSHD can do.”

“My whole life has been turned upside down,” Dalessandro said of her illness.

Having FSHD can be an intimidating and scary experience, Saxon said.

“If you have it, you have a 50% chance of passing it on to your children,” she said. “It’s something that can affect not just your future, but the future of your kids.”

Dalessandro’s journey with FSHD began in December 2013, when she slipped on black ice outside her home and fell. After that, her gait was off.

“It never got better,” she said. “What happens with the disease is it can be sitting quiet in your body, and then something can trigger it.”

She spent the next decade visiting doctors who thought she had suffered nerve damage. Because it progresses in different ways for different people, FSHD can be difficult to diagnose.

“I was determined to figure out what I had,” Dalessandro said.

It wasn’t until late in 2023 that she found out. A blood test confirmed that initial diagnosis in January 2024.

By then, the disease had progressed. Dalessandro couldn’t reach items in her closet or do certain exercises. While she has kept up with physical therapy and Pilates, FSHD limits activities she once enjoyed, including gardening, tennis and golf.

“It’s killing me that I can’t do what I call some of the simple things,” she said. “I’m used to being a person that was active, and right now I can’t even go into my garden. I can’t even get down my steps.”

Dalessandro uses a walker to get around. At home, she uses a cart.

“This is not glamorous,” she said.

Now retired, Dalessandro works full time to spread awareness and raise money for FSHD, turning her adversity into a call for action. Last year, her fundraising team, Joanne’s Warriors, raised more than $110,000 for the FSHD Society.

“I am a fighter,” she said. “To me, there’s no other way. I can’t just sit home and do nothing.”

The FSHD Society’s Chicago chapter will hold its main annual fundraiser, the Chicagoland Walk & Roll to Cure FSHD, at 10 a.m. Sept. 13, in Barrington’s Citizens Park. It’s the largest FSHD Society walk in North America, Dalessandro said.

“We think of it as a day of hope, connection and action,” Saxon said.

The FSHD Society was founded in 1991 by patients. The organization’s mission is to accelerate research and treatment development, while providing programs for those with FSHD. Walk & Roll events have raised $4.5 million to fund research and patient support programs.

“We’ve gone, in the past 34 years, from not knowing anything at all about this disease to knowing exactly what causes it,” Saxon said.

Along with hosting awareness events, Dalessandro created the message, “Fido Fights FSHD,” and handed out about 2,500 dog bandannas around the country. She encourages people to post a picture of their dog wearing the bandanna on social media.

“She’s a really impressive volunteer and advocate,” Saxon said. “She’s come up with so many different creative ideas. It’s really powerful to see people get this diagnosis and then, instead of just sitting with it, turn that around and start taking action.”

Dalessandro also led the charge for local and state proclamations recognizing FSHD Awareness Day, which is June 20. For World FSHD Day this year, Dalessandro and the FSHD Society got approval to light up five Chicago buildings in orange.

Dalessandro said having a rare disease is scary because people often don’t recognize it.

“I’m not going to give into this,” she said.