The worst day for many people with Parkinson's disease (PwP) is the day they're diagnosed. The second worst, the day their symptoms intermittently reappear—even while on treatment. These are called OFF periods, and more than a third of the one million PwPs in the U.S. contend with them.
OFF manifests in different ways. For some, it is shaking. For others, it is freezing. PwPs have different OFFs, experiencing a range of cognitive and physical symptoms. For everyone, OFF is a sign that their Parkinson's is progressing, and it is a phenomenon that is fraught with clinical confusion and emotional anxiety.
Despite its infrastructure and sophistication, virtually no one in the Parkinson's community talks about OFF.
PwPs don't want to admit they are getting worse, and they avoid the discussion with their doctors. Doctors don't have the language to pinpoint symptoms, so they speak in generalities and assume PwPs be forthright about their symptoms. Only one advocacy group has a single page deep on their website dedicated to OFF, and only 5% of the Parkinson's social posts mention OFF despite the fact that more than 1/3 of Parkinson's patients experience this phenomenon.
Bringing OFF to life is mission critical for Acorda. The company is developing a pipeline of therapies to treat OFF, but as of today, the Parkinson's community underappreciates the phenomenon.
Strategies:It was clear that no one could articulate OFF both visually and verbally better than the Parkinson's community itself. It was crucial for them to be the driving force of content creation, bringing OFF to life in their own words. Further, the content needs to be available 24/7 as many PwPs suffer from insomnia. Through Facebook and educational posts, our aim was to create an online "library" of resources that PwPs and caregivers could access anytime, anywhere Establish and build a new channel of relevant and engaged members of the Parkinson's community: The Parkinson's community is fractured, comprised of several small social media groups, so a hyper targeted Facebook advertising strategy was developed to ensure our content will reach it Continue to deepen understanding of OFF: Because OFF is individual, there is no one dominant definition. We need to continue to expand the boundaries of the meaning of OFF via continuous polling, commissioned pieces from key opinion leaders and a call to the community for content. Ensure synergy among related Acorda, advocacy on- and off-line channels: Social channels dedicated to the OFF conversation would be supported by standalone web properties to enhance search optimization. Also, cross-promotion of OFF content across all of Acorda channels as well as connection with all primary U.S. advocacy groups will further penetrate our content into the community.
In mid-July 2016, Acorda internally approved the concept of a Many Faces of OFF Facebook page. By September 6, we soft launched the page, complete with: A robust calendar of content posting multiple times a week: Leveraging content that we garnered from the advisory boards, we developed a minute-long trailer introducing the page, multiple gifs, as well as artwork from advisors Off-line Launch at World Parkinson's Congress (WPC) on September 20: We carefully constructed content to crescendo around the World Parkinson's Congress, the time and site of our official launch. The exhibit booth at WPC featured living portraits of patients featured in The Many Faces of OFF. Robust advertising, reporting and monitoring strategy: In order to grow The Many Faces of OFF community, we implemented Facebook "Like" ads. Creative elements from the Facebook page were repurposed and carefully distributed using a mix of demographic, behavior and interest targeting. Ad campaigns were monitored on the hour and optimized in real time to ensure we were hitting the right audience while maximizing budget Outreach to all primary advocacy groups as well as online influencers: Beyond advertising, we further built the community by calling on Acorda's champions and friends – advocacy organizations and participants from the regional advisory boards – to support and promote the page to their networks while also reaching out to new ones, such as online influencers identified via a social listening study. The response was immediate and thankful with many noting it was a much needed resource and volunteering to collaborate to further evolve the page
The Many Faces of OFF achieved its 2016 goal of 10,000 fans in October, just one month after launch. The community has grown to nearly 38,000 fans to date and continues to expand with great response. The Many Faces of OFF received more likes than already established pages in Parkinson's, such as the Parkinson's Unity Walk, the largest grassroots Parkinson's event in the U.S., and the American Parkinson's Disease Foundation. The page is on pace to be the third largest in Parkinson's, second only to international advocacy groups. The Many Faces of OFF received a Klout score of 55 only four weeks after the Facebook page was set live, 10 points above the average Klout score.
Engagement was instantaneous, requiring us to quickly develop an internal protocol to respond to comments and discussion. Engagement was so intense that it necessitated a change to our overarching paid strategy. Our post reactions, clicks shares and comments are robust and 100% organic.
This conversation around The Many Faces of OFF is groundbreaking. For the first time, caregivers and PwPs are coming out of the shadows and openly discussing OFF. The conversation has proliferated. Currently 15 advocacy groups from around the world have liked our page, shared our content and spurred OFF conversations on their social channels.
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