THE CHALLENGES & GOALS:

The culture of fitness has taught us we can do anything, but people with Down syndrome are told the exact opposite. Fitness isn’t something we encourage or emphasize for the Down syndrome community, because we underestimate what we think they can accomplish.

Despite this, anecdotal cases have clearly demonstrated that fitness helps people with Down syndrome become not only physically stronger, but mentally stronger too - a potentially ground-breaking connection that could empower the community. But there continues to be a lack of knowledge and lingering misperceptions about the effects of fitness on Down syndrome - in particular among doctors and parents who actively discourage fitness rather than encouraging it.

This left the Canadian Down Syndrome Society with two key goals in mind:

1. Prove the powerful effects of fitness through data, so it can be encouraged by doctors and parents within the community
2. Drive widespread awareness of the importance of fitness for people with Down syndrome

THE INSIGHTS & STRATEGY:

Athletes with Down syndrome have shown that fitness has the power to not only strengthen the body, but also the mind. Down syndrome athletes like Ironman Chris Nikic have observed strengthened memory, enhanced learning, boosted social skills, and increased confidence – all of which allow for a more independent lifestyle. This linkage could be very meaningful for the Down syndrome community, as an increase in cognition can lead to an incredible shift in quality of life.

The effects of fitness on people with Down syndrome remains anecdotal and has not been studied extensively. Society doesn’t expect people with Down syndrome to be physically active - an unconscious bias that has left fitness under-researched as a form of essential therapy.

In order to encourage fitness and truly change behaviour, we had to change mindsets about the benefits of fitness among key influencers. But showing the power of fitness wasn’t enough - we had to prove it in order to be taken seriously by skeptical audiences - both parents and doctors.

THE EXECUTION:

Fitness holds the power to improve cognition for people with Down syndrome, but it’s never been proven through research, so we recruited 200 people with Down syndrome to do just that. Introducing Mindsets, an evidence-based, globally unprecedented study to definitively prove the link between fitness and cognition for the Down syndrome community.

We launched on World Down Syndrome Day, recruiting individuals with Down syndrome, with the goal of tracking the impact of physical activity on their cognitive abilities, on a scale that’s never been done before. We partnered with Dr. Dan Gordon, Paralympian and Associate Professor in Cardiorespiratory Exercise Physiology at Anglia Ruskin University (ARU) to lead the research study, and Dr. Henry Mahncke and his team at BrainHQ to aid us in selecting the appropriate cognitive tests. To precisely measure the impact of exercise on their abilities, researchers recorded standard physical and cognitive assessments at the beginning and end of the study.

With only $5,000 in media, we had to find a cost-friendly avenue to recruit the Down syndrome community. We launched a social video showcasing the barriers people with Down syndrome experience when it comes to fitness and encouraged recruitment for the study. We then reached out to over 50 influencers in the Down syndrome community, including content creators, parents, and other key advocacy groups, asking them to share our campaign. This helped our recruitment efforts reach an international scale.

TECHNOLOGY & TOOLS:

Destination site - CDSS.ca was our landing environment for content and participant registration, serving as a bridge between media and the Mindsets user app.

User app - We created the world’s first app that joined data from physical (Fitbit) and cognitive (BrainHQ) training apps to provide not only a seamless experience to our participants but to correlate the data for the research team at Anglia Ruskin University (ARU).

A range of abilities exist within the Down syndrome community. We needed to be inclusive and make the experience easy and enjoyable. Based on discussions with the CDSS team and several doctors and researchers the following decisions were made to optimize the app:

Web based to take visual and dexterity disabilities into account
• Visually oriented and employs preferred colour schemes
• BrainHQ and ARU worked closely to select the ideal cognitive games
• Housing the two apps together will increase engagement and participation
• Two-way communication will encourage dialogue between participants and researchers
• Our Coach Chris encouragement videos will keep the participants engaged and motivated
• We conducted a pilot study with 12 participants to optimize all aspects of the app and study

USER EXPERIENCE:

The Mindsets research study rallied individuals with Down syndrome from all over the world - involving the community in a ground-breaking solution for millions living with cognitive challenges. The user experience on cdss.ca was built to be informative and inviting. We then screened potential participants both with physical and cognitive tests, including doctor confirmation, to ensure they could complete the required tasks.

Once qualified participants were approved, they were randomly placed in one of four cohorts to meet the study’s requirements. Participants were then provided a Fitbit to record their physical activity and access to the Mindsets app where they could record cognitive exercises after completing their physical activity. The app also connects research coordinators with study participants to motivate and keep them on track.

SUPPORTING CHANNELS:

• One long-form promotional and two recruitment videos
• Paid social to support awareness/recruitment efforts
• Email campaign to reach global Down syndrome communities
• Organic social to reach 50+ influencers in the Down syndrome community
• cdss.ca/mindsets as our content hub and registration platform
• Public Relations to drive awareness

THE RESULTS & IMPACT:

The Mindsets initiative has already achieved global reach. ROI is incalculable, but on a cost per impression basis, 36,000 impressions per $ spent isn’t bad. Campaign results are as follows:

Prove the importance of fitness through research and data:

• 200 eligible participants recruited - successfully achieving our research goal of becoming the first ever, statistically significant study on exercise and cognition within the Down syndrome community.
• Study participants from 4 continents, with global community groups answering the call for recruitment.

Drive awareness of the importance of fitness:

• With a small media budget of only $5,000, we achieved 180M media impressions
• 1.6M video views across our social media channels

We are currently awaiting results from the Mindsets joint research study, but early data from the pilot phase has outperformed expectations. Looking forward, we’ll share the research in early 2022 at world-renowned conferences and in accredited medical journals to ensure physical activity becomes a prescribed therapy for people with Down syndrome.

PARTNER INVOLVEMENT:

Anglia Ruskin University Research Team - Dr. Dan Gordon, Paralympian and Associate Professor in Cardiorespiratory Exercise Physiology, and team - partner in data collection

Brain HQ by Posit Science - Dr. Henry Mahncke & Dr. Michael Merzenich

CDSS - Mindsets

CREDITS

Gold partners