This Parkinson’s Awareness Month, we’re getting personal. In partnership with PD Avengers, our #ParkinsonsCouldBeYou billboards in Times Square connect directly with the undiagnosed public about their individual Parkinson’s risk. As a result, there’s a growing buzz on- and off-line as individuals across the country share that the risk is real in their own words. And the only thing that might be missing is…you.
Your perspective. Your story. Your family’s story.
Advocacy doesn’t always start with a microphone or a stage. It starts with honesty, courage, and a willingness to be seen. In today’s world, there are more ways than ever to share your experience. Whether you reach thousands or just one person, your story matters. It can help someone feel less alone, encourage a newly diagnosed individual, or move someone to take action.
However you choose to share, know this: your voice carries more impact than you may believe. Here’s a list of suggestions to get you started.
PMD Alliance suggests…
1. Make a social media post or video.
You could share a fact about Parkinson’s risk from f-parkinsons.com like: “Cleaning chemicals TCE and PCE are strongly linked to Parkinson’s, and they’re lurking in the drinking water of 14 million Americans.” Or talk about your diagnosis process and how you felt, some things you lost because of your PD journey, and maybe even things you’ve gained along the way. You could attach an image or video from the campaign, or share pictures of people (or pets!) who support you.
We’re including a basic template below to help you get started, but always make it your own! Just be sure to include the hashtag #ParkinsonsCouldBeYou to join the campaign and share it with the greater Parkinson’s community.
Script template: “[Insert Fast Fact]. I’m ________, and I never thought Parkinson’s could be me until I was diagnosed with it. Take it from someone who’s been there: your Parkinson’s risk is real. Take action now at f-parkinsons.com.”
2. Start personal conversations with your network.
You can use the language at f-parkinsons.com if you want some quick datapoints to share that could affect to anyone – but don’t over-rehearse. This should be you organically talking about how PD impacts you and your loved ones with someone who cares enough to listen and try to understand. Never underestimate the impact of one-on-one connection.
3. Wear an F-Parkinson’s tee & invite conversations with strangers.
Available from PD Avengers in both explicit and non-explicit versions, these shirts are a great way to invite public education opportunities to come to you! Once someone comments on the shirt or asks a question about it, that’s your opportunity to bust Parkinson’s myths and share some lived wisdom.
4. Start a fundraiser.
It’s now easier than ever before to start your own custom fundraiser for the Parkinson’s community. With our new Peer-to-Peer fundraising portal through Classy, create a fundraiser that suits your personal network and features your personal Parkinson’s story, complete with a donation widget that lets you set a goal and track what you’ve raised. Start now to help two Parkinson’s powerhouses at once with a #ParkinsonsCouldBeYou fundraiser for PD Awareness, jointly benefiting PMDA and our campaign partner PD Avengers. Find fundraiser ideas and get started here.
5. Guest speak on a Parkinson’s podcast.
There are small, community-oriented podcasts popping up across the Parkinson’s community, and many of them are seeking interviews with people like you! As a person living with Parkinson’s, you’re an expert in daily life with PD and thus a highly qualified guest speaker. Every PD journey is unique, which is one reason sharing experiences can be so interesting.
Here are 4 podcasts we know are currently airing episodes that we’d recommend checking out. If you like one, you can drop them a note about possibly coming on as a future guest!
- YOPN’s Living Well Starts Here | YOPN
- The TogetherForSharon® Podcast
- Frankly Speaking: Unfiltered insights on living with Parkinson’s | Podcast on Spotify
- Too Young for this Sh*t | YOPD Podcast
6. Write a blog post.
PMD Alliance is always seeking new content for our blog and monthly newsletters. If you have a question you want to research and write about, a funny story to share, or a challenge you overcame to reflect on, reach out to info@pmdalliance.org with the concept for your blog. We’ll let you know if it sounds right for our platform and provide guidelines to help make the process from writing to publishing as smooth as possible.
7. Try Public Speaking
If you’re comfortable, take your story to the stage. From local support groups to national events, speaking opportunities allow you to advocate, educate, and inspire on a larger scale.
8. Write to your local paper.
Submit an op-ed, respond to a story, or write a letter to the editor. Local media is always looking for authentic voices. Your perspective can educate and influence your entire community.
Remember: Sharing your story isn’t limited to one month. Every conversation, every post, every moment of honesty has the potential to make a difference.
Your story matters. And someone out there is waiting to hear it.
