Spotlight on education, research for Parkinson’s Awareness Month

World Parkinson’s Day on April 11 is the centerpiece of the observance

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by Mary Chapman |

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The focus of this year’s Parkinson’s Awareness Month, starting today, is on research and a better understanding of the neurodegenerative disorder that affects more than 10 million people globally. World Parkinson’s Day on April 11 is at the center of the observance.

Parkinson’s disease can cause a broad array of physical problems such as tremor, rigidity, balance and gait issues, and slowed movement, called bradykinesia. The disorder can also cause nonmotor symptoms that may affect mental health, cognition, and sleeping. Awareness is key to recognizing Parkinson’s, and toward better diagnoses and care.

The nonprofit Parkinson’s Foundation is partnering this year with Mitsubishi Tanabe Pharma America to help people understand the complexity of Parkinson’s and recognize its symptoms. Called “The ABCs of PD,” the digital campaign, which is also available in Spanish, provides a symptom or other term related to the disorder for each letter of the alphabet.

Every letter is on a flip card that reveals something about the word in the context of Parkinson’s when it’s touched. “A” represents “Anxiety” and the flip card reads: “Parkinson’s symptoms not related to movement are often more troublesome and disabling than movement symptoms. These symptoms can include anxiety, depression, vertigo, and more.” The card for  the letter Z is “Zen.” Its card reads, “Stress can make PD symptoms worse. Maintaining emotional health is essential to living well with Parkinson’s and can help manage symptoms.”

Patients are asked to share the campaign on social media with the hashtag #ABCsofPD and show on the organization’s social media channels the word or term that most resonates with them. Incorporating their own “ABCs of PD” into a story about themselves to inspire others is encouraged.

The foundation is also providing a toolkit with a sample proclamation for state or local governments, and other resources.

“Parkinson’s Awareness Month allows us the opportunity to bring attention to not only Parkinson’s disease (PD), but also to the availability of critical resources that can lead to an overall better quality of life for someone living with PD,” John L. Lehr, the foundation’s president and CEO, told Parkinson’s News Today in an email. “Our goal at the Foundation is to have local communities engage with the #ABCsOfPD campaign so they feel empowered in understanding PD’s many aspects — including motor and nonmotor symptoms — from A to Z.”

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Awareness month’s events, activities

The American Parkinson Disease Association (APDA) is marking the month with the theme “Living Better Together,” which underscores the importance of connection and community. The nationwide grassroots organization helps patients and their loved ones build a community and assemble resources and education.

The organization is also offering virtual and in-person programs across the country, including a “Let’s Keep Moving with APDA” webinar on April 2 at 1 p.m. EST on freezing of gait. On April 8, a 3 p.m. EST “Dr. Gilbert Hosts” live broadcast will discuss the disease’s mental health challenges.

Other events and activities through the APDA’s network of chapters and Information & Referral Centers include:

“We continually see the profound impact that mutual support, shared experiences, and collective empowerment can have on people impacted by Parkinson’s disease and as such, we are dedicated to fostering this vital community, providing resources, education, and a platform for connection,” Leslie A. Chambers, APDA president and CEO, said in an email. “Through our April Living Better Together campaign we are celebrating these special connections and letting people know we are here for them, to walk hand in hand with them, and to be a reliable and trusted part of their community and their care team.”

The Michael J. Fox Foundation (MJFF) is offering ways to commemorate the month, including by taking a free test to help researchers learn more about loss of smell and brain health. The organization is also recruiting patients diagnosed within the last two years who haven’t begun treatment to enroll in its Parkinson’s Progression Markers Initiative study.

The foundation is also inviting families to participate in its free “Parkinson’s IQ + You” event. Participants can learn about disease management and the latest research, and connect with local resources. The events will be held in South Florida, Detroit, Houston, San Diego, and Charlotte, N.C.

World Parkinson’s Day on April 11 is also MJFF’s Day of Giving, an opportunity to make a donation toward research.

To help raise funds and awareness for research, RaceTrac, which operates more than 580 convenience stores, is partnering with the MJFF for “Coffee for a Cause” week. From April 14-20, all proceeds will go to the foundation.

Throughout April, customers can also support the organization by adding $1 to in-store purchases or buying a special $1 candy bar at the register. To date, RaceTrac has raised more than $8 million for the Foundation, including through its Run for Research 5K, set for Sept. 14 at Atlanta’s Truist Park.

“RaceTrac’s partnership with The Michael J. Fox Foundation is very personal for my family and we are so proud of the outpouring of support our guests have provided over the years, including raising more than $700,000 during ‘Coffee For A Cause’ last year,” Melanie Isbill, RaceTrac chief brand officer and MJFF board member, said in a press release. “The foundation has made significant advances in the past year, and I am humbled by RaceTrac’s unwavering presence in this fight as we work together to fund research towards advances in treatments and a cure in support of patients and their families.”

The rehabilitation program PD Warrior will present the 7th annual “Insight into Parkinson’s” on April 11-13. The free conference will cover topics like medical advancements, research breakthroughs, nutrition, movement, caregiving, and mental health.

Outside the US

Parkinson’s UK is marking World Parkinson’s Day with its “Make it Blue” campaign. Whether it’s lighting up buildings, dyeing hair, hosting a “blue bake sale” or sporting blue apparel, supporters are invited to go all in on blue, the official color of Parkinson’s. It’s also offering a guide with ideas about organizing events and raising funds and awareness.

In Canada, the Parkinson Association of Alberta is encouraging participation in the global April 11 Sit to Stand challenge presented by Stand Up to Parkinson’s, an organization that promotes exercise for the progressive neurodegenerative disorder.

The event calls for participants to complete 2 million “sit to stand” maneuvers in 24 hours. Participants are asked to post on social media and invite others to follow. A “sit to stand” refers to moving from a seated position to a standing one, a basic, everyday motion that can be done for exercise.

In Alberta, the Parkinson Association is also offering ways to participate in awareness initiatives, including its #Unshakeable campaign, which will showcase stories from patients, caregivers, healthcare professionals, and others, along with other upcoming events.

As part of the organization’s “Spark the Night Up” for Parkinson’s, landmarks such as Calgary Tower, Lethbridge City Hall, Edmonton High Level Bridge, and the Saamis Tepee will be illuminated on April 11.