Cystic Fibrosis Canada: Building Relationships Online When In-Person is Impossible

Cystic fibrosis (CF) is Canada’s most common fatal genetic disease affecting children and young adults.

Cystic fibrosis is also a very isolating disease. People living with CF are at a greater risk of getting sick as mucus buildup in their lungs allows for germs to thrive and multiply. As a result of their weakened immune systems, those living with the disease often avoid face-to-face interactions with other CF patients, posing a high risk of sharing superbugs.

To support the emotional well-being of patients and families living with this genetic disease, social media allows friendships and open communications among those who cannot meet in-person.

Cystic Fibrosis Canada is a national not-for-profit organization with a mission to fund CF research and support high-quality clinical care.

We spoke with Kristy Gill, the organization’s Executive Director for Western Canada to learn how social media helps her team achieve the organization’s mission.

With the help of hundreds of dedicated volunteers and staff the organization is able to:

  • Advocate to influence policy makers for resource allocation and better care
  • Inform, support, and connect all those affected
  • Collaborate across six regional offices to provide support and resources for advocates and 50 Volunteer Chapters

While social media plays an integral role in providing marketing and communications channels to advocate, inform, and connect, Hootsuite ties everything together as one coordinated effort.

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Raising the voice of Canadians with cystic fibrosis

Cystic fibrosis patients and their families need someone to talk to—for emotional support, resources, and a sense of community. Patients and families have access to professional support, treatment, and resources through CF clinics. But the organization has taken this care one step further. They use social media to open up communication channels that enable friendships to blossom and support groups to form organically.

“Social media gives a voice to Canadians living with cystic fibrosis,” says Kristy. “It gives them a chance to connect with one another when meeting in-person is impossible. In many cases, best friends have never actually met.”

Using social media to advocate and influence

Today, everyone is connected online—from policy makers to influencers, such as celebrities, trendsetters, and activists. For Cystic Fibrosis Canada, finding those influencers who have a strong impact on their following is equally as important as sourcing policy makers when looking to advocate change. By reaching out to influencers on social media, they can easily inform, educate, and advocate for resource allocation to support CF research and patient  care.

“Connecting with influencers online brings us that much closer to getting funds for innovative research, which could in turn help find a cure or control,” says Kristy.

Organizing social media efforts to make an impact

“Hootsuite gives us the power to be more effective on social media,” shares Kristy.

Kristy uses Hootsuite to organize communications in coordination with the six regional offices, 50 volunteer chapters, and multiple advocates and ambassadors across the country. While each volunteer chapter has a mandate to raise funds and awareness through events and content marketing, the regional offices oversee workflow and allocate budgets accordingly.

As the Executive Director for Western Canada, Kristy ensures that chapters and regional offices develop a cohesive social strategy with the rest of the organization by sharing sample sponsorship packages, participant guidelines for social, and marketing materials. Her social media team uses Hootsuite to schedule messages and monitor all communications to ensure that all conversations are responded to, and in a timely manner. The ease at which all of this can be done using Hootsuite frees up her team to source influencers, advocates, and volunteers who can help promote and advocate their mission.

Measuring results on social media

The organization’s regional teams measure success by the amount of funds raised for campaigns and events, and the number of people and sponsors talking about the events or organization itself.

For example, one major campaign that took place in 2014 was 65for65Roses—an ode to cystic fibrosis’ common rhyme, 65 Roses. The campaign took place when one of their GearUp4CF riders, turned 65 while bicycling from Vancouver to Banff to raise $65,000 for Cystic Fibrosis Canada. This was in honour of his daughter Eva, who sadly passed away four years before from cystic fibrosis.

The organization used social media to promote the campaign and subsequent events, including their annual 65 Roses Gala, in an effort to gain nationwide support and drive awareness. Over the course of the 9-day ride, Eva’s dad, Bill Markvoort and his team exceeded their fundraising goal and raised over $75,000. Social media and Hootsuite together are integral for supporting fundraising campaigns like 65for65Roses and events, such as the annual Great Strides Walk.

Not only does social media provide channels for the organization to market and connect, they also provide channels for affected families, patients, and professionals to support one another.

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