Activities are underway to mark Parkinson’s Awareness Month, set aside each April to draw attention to the neurodegenerative disorder that affects some seven to 10 million people globally. At the center of this observance is World Parkinson’s Day April 11.
Patients, family, caregivers and friends across the country are sharing stories, asking local governments to issue proclamations, participating in virtual workshops and lectures, and even taking a quiz. All this is to heighten awareness of Parkinson’s disease (PD) among the general public, while gaining the attention of lawmakers, industry representatives, scientists, and health professionals.
The theme of this year’s awareness month is #KnowMorePD. As such, the Parkinson’s Foundation is seeking not only to raise awareness of the disease, but of all the resources the organization offers to help make lives better for people with Parkinson’s and their families, particularly during uncertain times.
“We have greatly expanded our research and education initiatives online to reach people with Parkinson’s and provide information they need to live better with the disease,” said John L. Lehr, president and CEO of the Parkinson’s Foundation, in a statement to Parkinson’s News Today.
“As the pandemic continues, so does our commitment to raising awareness and acting as a frontline resource for the Parkinson’s community during Parkinson’s Awareness Month and beyond,” he said.
The organization is offering a downloadable guide with some suggestions and tools for participating from home this month. The guide includes a proclamation template for requests to local governments to officially recognize Parkinson’s Awareness Month, as well as a sample press release, e-mail blurb, letter to the editor, and sample email posts. The guide also includes several social media graphics.
In the guide, supporters are encouraged to post to social media using the hashtag #KnowMorePD. “All month long, post photos, videos, facts, stories, and resources on social media to raise awareness about PD and the Parkinson’s Foundation,” the organization requests in the guide.
Supporters are welcome to submit narratives to the organization’s My PD Story effort to tell people what it’s like to live with Parkinson’s and how the foundation is helping.
In keeping with the event’s theme, the foundation developed what it calls a #KnowMorePD Quiz, which supporters are asked to share on social media. If the quiz is taken during April, participants will be entered into a weekly drawing for a $25 Amazon gift card.
At month’s end, the organization will select a grand prize winner who will get a Kindle Paperwhite ebook reader that’s preloaded with all 12 of its educational books about Parkinson’s. Gift card drawings are April 12, 19, and 26, and May 3. The kindle drawing is May 3; that winner must be a U.S. resident. All winners will be notified via email.
Quiz questions include those about symptoms, Parkinson’s specialists, demographics, genetics, veterans with with the disease, exercise, and hospitalization.
As part of its goal to inform or remind people of resources it offers throughout the year, the foundation is calling attention to its twice-monthly podcast called “Substantial Matters: Life and Science of Parkinson’s,” and its PD Library, an extensive collection of books, fact sheets, videos, and more.
The organization also is presenting other events this month:
— April 5, “Mindfulness Mondays — Awareness of the Body for Pain Relief” Zoom presentation
— April 7, Parkinson’s Wellness Workshop: Qigong & Dance virtual workshops
— April 7, “Living with Parkinson’s: What You and Your Family Should Know” Zoom lecture
— April 7, “Understanding Thinking Changes in Parkinson’s” Zoom presentation
— April 8, “Celebrate Spring New York,” an annual fundraising event, virtual for this year
— April 8, “Life with Parkinson’s After the COVID-19 Vaccine” live online Q&A
— April 12, “Mindfulness Mondays — Awareness of Breath for Anxiety” Zoom presentation
— April 12, “Mind, Mood, and Motion” virtual lecture
— April 16, Spring Parkinson’s Symposium — Minnesota, a virtual event
— April 17, New York State Parkinson’s Education Symposium, a Zoom presentation
— April 19, “Mindfulness Mondays — Mantra for Stress Relief” Zoom presentation
— April 20, “Expert Briefing: Mental Well-Being and Memory” lecture
— April 21, “Living with Parkinson’s: What You and Your Family Should Know” virtual presentation
— April 24, “Let’s Talk About It: Symptoms Beneath the Surface” virtual presentation
— April 24, “Early Onset Parkinson’s: Strategies to Live Well” virtual presentation
— April 26, “Lunes de Atencion Plena — Mindfulness Mondays en Espanol” Zoom presentation
— April 27, Parkinson’s Wellness Workshop: Drumming & Taekwondo workshops. Virtual, community space, or outdoors.
— April 28, “Miercoles de Bienestar — Wellness Wednesdays en Espanol” virtual event
— April 28, “Veterans and PD: Social Connection and Empowerment” virtual program
— April 29, “Women and PD” virtual presentation
— April 30, “Getting Expert Parkinson’s Care in Eastern North Carolina” Zoom program
— April 30, “Women and PD: HOPE” virtual program
Elsewhere, The Michael J. Fox Foundation (MJFF) is asking awareness month supporters to sign up for updates of the latest research news. The organization also is encouraging people to download a free excerpt of the memoir, “No Time Like the Future: An Optimist Considers Mortality” by the MJFF’s founder: Parkinson’s patient and actor Michael J. Fox. Watch this space for an opportunity to ask Fox questions during Parkinson’s Awareness Month.
Also this month, the Brian Grant Foundation (BGF) is hosting a series of virtual events that are focused on using team-building to enhance the quality of life for people living with Parkinson’s. Online events include “Motivational Monday” workouts plus an “Expert Q&A” webcast about constructing a Parkinson’s healthcare team.
The workouts will be led by television’s American Ninja Warrior Jimmy Choi and will stream on BGF’s social media channels each Monday in April at 9 a.m. PDT. The Q&A is on April 13 at noon PDT and features movement disorder specialist Suketu Khandhar, MD. More information is available here.
To further underscore “teamwork,” former NBA player Brian Grant, who established the foundation, will release his memoir, “Rebound: Soaring in the NBA, Battling Parkinson’s, and Finding What Really Matters,” on April 6. Grant was diagnosed with Parkinson’s at age 36.
BioNews Services, which publishes this website, is presenting an initiative called 30 Days of Parkinson’s that will feature a range of stories from the community — patients, caregivers, and family members. The project features a different person sharing their life each day throughout April on Parkinson’s News Today, as well as on Facebook and Instagram.
“Our ‘30 Days of Parkinson’s’ series provides us with the opportunity to highlight a wide range of stories from people within this community,” said Kevin Schaefer, director of forums for BioNews. “We will feature a wide range of stories from people living with PD, caregivers, family members, and more.”
The project is headed by Mary Beth Skylis, a Parkinson’s News Today columnist and forum moderator. “She’s assembling a fantastic team of contributors, and we’re excited to share these stories throughout April,” Schaefer said.
For World Parkinson’s Day April 11 the International Parkinson and Movement Disorder Society is seeking to raise awareness by sharing information, articles, and resources for patients, caregivers, and physicians through its social media channels. For the day’s observance, the organization is using the hashtags #MDS4Parkinsons and #UniteforParkinsons.
In Australia, Parkinson’s NSW is featuring a variety of events, and is inviting supporters to share photos and messages. Meanwhile, Parkinson’s UK will present a live event on April 11 to discuss topics that include the latest research and how you can support a friend with the disease. More information is available here.
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