NORTH BRANFORD, Conn. — A North Branford woman is sparking change on the state level by using her rare disease to inform people, including lawmakers, about accessible parking laws.
Alex Bode has a genetic disorder called Friedreich's ataxia (FA), which impacts the nerves and gradually deteriorates various functions of the body.
She isn’t letting her disease stop her; Alex started a nonprofit called “Peace, Love, and Accessibility” to educate and lobby for more accessible parking options in Connecticut.
Mary Caruso, Alex’s mother, said Alex and her brother Sam were diagnosed with the disorder as children.
“Sam was diagnosed first," Caruso explained. "Both Sam and Alex were born with no symptoms whatsoever, no clue of anything wrong, both were very active kids."
“Sam played soccer, basketball, rode horses and was a great rider by the time he was seven years old," Caruso continued. "He did karate. Al loved to dance; that’s all she wanted to do; I have videos of her dancing on counters in the kitchen. Then one day Sam was at karate [and] he came home and said 'I couldn’t do the exercise because I had to shut my eyes and then I fell over.'”
After extensive testing, Sam was diagnosed just six months later at eight years old. Due to Caruso knowing what to look for, when Alex began experiencing the same symptoms, she was diagnosed when she was only six years old.
In the blink of an eye, the two kids fell victim to the challenges of FA. Their mother says the disorder changed everything.
“It impacts their fine motor, gross motor, speech, vision, cardiac –,” Caruso said. “Sam and Al are on different paths with their progression.”
As the months and years passed, Alex and her brother lost the ability to walk, talk, see, and even move. As of now, FA has no cure.
“Nobody knew anything; no research was being done; I even went out and bought a computer so I could find other people dealing with this,” Caruso said.
Sam and Alex have not let their physical challenges stop them from living their lives; for them, it is more about ability than disability.
“I’m very proud of the two of them. They’ve gone to college, gotten their degrees, they both work, they’re compassionate, they volunteer all the time, they’re kind – isn’t that what life is all about?” Caruso said.
Sam currently works in the public school system, helping organize career fairs and even taking charge of a mentor program that connects high school students with various professionals. He also spends time volunteering and advocating for issues he is passionate about.
Alex has taken her love and passion for advocacy straight to the streets by starting “Peace Love and Accessibility.” It focuses on educating people regarding accessible parking placard use, even bringing in state leaders, local organization leaders, and law enforcement to help with her mission.
“We are coming up with more ideas to address this; it’s an ever-evolving problem,” said State Sen. Vincent Candelora (R-86).
Alex's new lot in life is teaching parking lot etiquette that helps those with physical challenges.
In Connecticut, the “lifetime handicap parking placard” stopped being issued in 2010. Now, it must be renewed annually.
Alex tells us she and her family often see the lifetime placards still being used in people’s rearview mirrors with no consequences. However, she said the biggest issue is seeing many people who do not have a placard using the spaces.
“It’s even more difficult if you use a ramp van because you need more space," Caruso said. "Do you know how many times they’ve left and come back, and someone parks in the access aisle?"
These frustrations brought Alex to the Connecticut State Capitol. She and her team got a bill passed that helps police the use of placards. On top of that, they were granted a committee within the Department of Transportation. That committee has not been formed yet, but the work is already being done this year to get more bills passed.
“The placards can be issued by any physician, but I think they should be issued by the treating physician,” said Candelora. “We are seeing them making money by issuing placards when they have no patient relationship.”
Alex said they have been reaching out to local law enforcement as well to partner with them on educating and enforcing the proper accessible parking laws.
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According to Alex, she met with Guilford police and hopes that department is just the beginning regarding asking officers to be more proactive when enforcing parking procedures.
Caruso said there is a lot of work to be done on the enforcement side.
“Right now, there’s laws and there’s enforcement, and both are very disjointed,” Caruso said. She continued saying they want to have an educational conversation with people, no pointing fingers or accusations, to create a better future for anyone looking for an accessible parking spot.
From the Capitol to the community, Alex is partnering with groups on small projects that make a big difference, such as working with a local Girl Scout troop to install a wheelchair ramp at a Connecticut beach club. Close family friend and troop leader Laura Francis said learning about accessible parking and the challenges that come with it have been eye-opening.
“In my exposure to everything they are doing it’s important, education is the first place to do something. Learn the problem, learn what you can do, and care enough to do something,” Francis said.
Ultimately, it comes down to creating a safe space for Connecticut.
“Stop and think about what you are doing, put yourself in someone else’s shoes,” Alex said.
“I think that’s great advice, be mindful, stop and think there really aren’t a lot of spots,” Caruso said.
State leaders and Alex said they are working this legislative session to get more laws passed that will directly benefit those needing accessible parking and will not stop until they get it done.
If you would like to help Alex with her mission, she is asking healthcare providers, law enforcement, and anyone who drives a car to fill out a survey with a few questions. Filling out the one that works for you takes less than two minutes:
Placard user: Placard User Survey
Non-placard user: Non Placard User Survey
Healthcare Provider: Healthcare Provider Placard Survey
Law Enforcement: Connecticut Police Department Survey
State leaders and Alex said they are working this legislative session to get more laws passed that will directly benefit those needing accessible parking and will not stop until they get it done.
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Brooke Griffin is a reporter for FOX61 News. She can be reached at bgriffin@fox61.com. Follow her on Facebook, X, and Instagram.
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