Case study 05 · Advocacy & public awareness

Making an invisible illness visible

How one patient advocate turned landmark lightings into a growing platform for community, awareness and demands for better MCAS care in Canada.

Emily Foucault pictured with the CN Tower on International Mastocytosis and Mast Cell Diseases Awareness Day — Emily Foucault pictured with the CN Tower in Toronto on International Mastocytosis and Mast Cell Diseases Awareness Day on October 20, 2024.

Context

What shaped the work

Mast Cell Activation Syndrome is an under-recognized multisystem condition. People living with it can face long diagnostic journeys, limited clinical expertise, fragmented treatment and medical dismissal.

International Mastocytosis and Mast Cell Diseases Awareness Day on October 20 created an opportunity to make an often-invisible community publicly visible.

Emily's role

Where Emily contributed

Emily acted as a patient advocate, campaign organizer, writer, designer and public storyteller. Drawing on her own experience with MCAS, she independently secured the CN Tower's inaugural purple lighting for the awareness day in 2023.

Collaborative process

How the work happened

The campaign connected patients, caregivers, advocacy organizations, landmarks, public officials, media and international awareness efforts. When nonprofit support was required, Emily worked with Mast Cell Action in the United Kingdom while leading the Canadian campaign independently.

Contribution

From insight to action.

Initiated and led landmark outreach beginning with the CN Tower.
Expanded visibility to the Toronto Sign and Niagara Falls.
Designed campaign materials and a central information page.
Created customizable advocacy letters to government.
Coordinated social storytelling and the #MCASCanada campaign.
Organized a Toronto community gathering at Stackt Market.
Connected her own story to wider gaps in recognition, diagnosis and care.

Output

What resulted

The advocacy produced annual purple landmark lightings, public campaign resources, government letters, community storytelling, a Toronto gathering and published commentary about the Canadian MCAS care crisis.

Read about the MCAS care crisis ↗

Impact

What changed

Secured the first CN Tower lighting for International Mastocytosis and Mast Cell Diseases Awareness Day in 2023.
Built continued landmark participation over multiple years.
Expanded the campaign to additional major Ontario landmarks.
Created a more visible Canadian platform for patients to share stories and advocate for better care.
Drew public attention to gaps in MCAS diagnosis, treatment, research and clinician education.

Continue through the work

About Emily