April 11th is the official day for acknowledging Parkinson’s disease. But the evening has taken center stage in an annual initiative meant to draw attention to the litany of symptoms patients with the neurodegenerative disease face after sunset.

As part of the effort, dubbed “Spark the Night,” buildings, bridges and iconic landmarks around the globe have been enlisted to glow blue. Among the more than 300 that signed up, as of this writing, were NYC’s Empire State Building, Chicago’s Sears Tower, and the historic Sophienkirche in Berlin, Germany. 

Organizers said they aimed for 10 million lights, coinciding with the number living with the disease worldwide.

“Spark the Night is intended to draw attention to the nighttime symptoms of PD, which are often either unspoken or not addressed,” said Larry Gifford, co-founder of the Global Alliance to End Parkinson’s, aka PD Avengers, who is leading the effort. 

As the second-most common neurodegenerative disease after Alzheimer’s disease, Parkinson’s itself is often misunderstood. “It’s not just a shaking disease,” Gifford added. “It’s a full-body disease, including motor and non-motor symptoms.” 

The name “Spark,” he said, was inspired by the electrochemical neurotransmitter dopamine, which is key to motor function, mood and decision-making. People with PD have low levels or are missing dopamine in the brain, mainly due to impairment of neurons in an area called the substantia nigra.

Sleep disturbances are a lesser-known symptom than the disease’s most noticeable hallmark, the physical hand tremor. Nevertheless, 90% of patients with PD report having these symptoms. And they’re quite disruptive, with 80% of people experiencing two to five awakenings per night.

“The nighttime symptoms are very often neglected,” sometimes even by neurologists, said Maurizio Facheris, senior medical director at AbbVie, one of Spark’s corporate backers. “Parkinson’s doesn’t necessarily just show during waking time. It’s a 24-hour-a-day issue. On top of sleep disturbances, there are challenges with the motor component of sleep – tossing and turning, or waking to go use the bathroom, coming back and falling asleep again.”  

Night can be “a very isolating time,” added Gifford. “Patients are up at 2 am and they can’t sleep because they’re in pain and don’t know what to do. They’re kicking their wife because they have restless legs or REMS Sleep Behavior Disorder, which involves punching the air as they act out their dreams. So it’s important for people to start having a conversation with their doctors about the difference between day and night symptoms.”

Research suggests these disturbances generally worsen with disease progression. Facheris, a neurologist and movement disorder specialist by training, noted that patients go through moments where their symptoms are well-controlled by their treatment – known as “on times” – and moments when they’re not, known as “off times.”

“Patients often wake up in the morning in the ‘off time,’” Facheris added. “So during the night, the sleep component is worsened by the fact that their symptoms are not in control.” 

The dopaminergic medications carbidopa/levodopa remain the most effective symptomatic therapy, according to the American Parkinson’s Disease Association. Once levodopa gets absorbed in the blood, it travels to the brain, where it’s converted into dopamine.

There are no approved disease-modifying PD therapies, only those that alleviate symptoms, but AbbVie is among those attempting to develop one. Last year the pharma major acquired neurodegenerative disease biotech Mitokinin, whose lead compound is designed to impact the disease’s pathogenesis and progression.

Its pipeline also includes ABBV-951, a 24-hour subcutaneous infusion form of carbidopa-levodopa which was resubmitted this year after last March’s rejection by the Food and Drug Administration. The drug is approved in the EU and is sold under the brand name Produodopa.

“What we are definitely trying to do is increase awareness of the concept that there’s no one single treatment working for every patient. It’s a customized approach,” said Facheris.

Gifford said he has benefited from a type of surgical therapy called deep brain stimulation, or DBS, which involves implanting an electrode in the brain and using a pacemaker-like device to deliver stimulation.

Of the 90,000 people in the U.S. diagnosed each year with PD, only between 4% and 10% are diagnosed before age 50. Gifford is one of them, having been diagnosed at age 45. 

Now 52, he’s been a vocal advocate, hosting the podcast “When Life Gives You Parkinson’s” from 2018 to 2024. Currently, he serves as a host of the Michael J. Fox Foundation podcast and webinars, among others. He’s also a member of Fox’s research foundation and sits on the editorial board of the Journal of Parkinson’s Disease

Gifford also invites those with the disease and their caregivers to take a sleep survey hosted on PDavengers.com. The survey, which so far has drawn about 800 responses, has already revealed some interesting trends.

Preliminary findings, Gifford said, suggest that the first thing patients are offered when they talk about their sleep is a new prescription. 

“Is that really the best thing?” he questioned. “Because I can tell you right now, I’m looking at eight bottles of prescriptions already. I don’t need another one.”

Facheris said sometimes neurologists neglect to ask patients or caregivers, “How was your night?” And that’s not the only aspect of the disease that may be underappreciated. Among PD’s non-motor symptoms, up to half of people can develop depression. 

“Many people know Parkinson’s,” said Facheris. “They look at the Pope, Mohammed Ali and Michael J. Fox and see the movement component but don’t understand there is no one Parkinson’s similar to another – and all of the non-motor components that truly impact quality of life.”

Gifford added the sobering projection that the number of people who have Parkinson’s worldwide is expected to double by 2050 to 20 million.

“We don’t know exactly how to stop it,” he said. “There are some biomarkers that are in the early stages now which is exciting. But we need to wake up. The whole world needs to wake up. It can strike anybody, anytime, anyplace. Parkinson’s is not going away unless we do something drastically.”