How one rare disease community is turning miles into visibility, hope and action

On 30 May 2026, families, supporters and advocates across the country will come together for a powerful day of awareness for one of the rarest and least understood brain vascular conditions, cerebral proliferative angiopathy (CPA).

As part of CPA Awareness Day, the CPA Research Foundation will host a full social media and magazine takeover dedicated to raising awareness of CPA, amplifying patient voices and highlighting the realities faced by families living with rare disease.

At the heart of the campaign is a community walking challenge designed to bring people together through awareness, solidarity and shared purpose.

Throughout May, supporters have been taking on the challenge in their own way. Some participants have completed 13.1 miles independently before joining together on the Awareness Day for the final stretch, while others have walked 26.2 miles across the month, fitting miles around work, hospital appointments, family life and everyday commitments.

There has been no single route, pace or expectation.

Just one shared goal: making CPA visible.

What is CPA?

Cerebral proliferative angiopathy (CPA) is a rare and complex brain vascular disease involving abnormal blood vessels within the brain. Unlike more commonly recognised vascular malformations, CPA is diffuse and difficult to treat, often presenting significant risks and uncertainty for patients and clinicians alike.

People living with CPA may experience seizures, chronic headaches, strokes, neurological symptoms and life-altering complications. For many families, the diagnosis can feel isolating due to the lack of awareness, limited research and the rarity of the condition itself.

For the CPA community, awareness is not simply about recognition, it is about creating understanding, improving support and driving forward urgently needed research.

A campaign built on community

What makes this year’s campaign particularly special is the sense of togetherness behind it.

Across the month, people have walked in parks, on treadmills, during lunch breaks, with friends, with children, alone and alongside others. Some participants have shared photos of muddy trainers and early morning miles, while others have quietly completed their challenge behind the scenes.

Every mile has represented something personal.

For some, it has been about honouring a loved one living with CPA. For others, it has been about standing beside families navigating the uncertainty that often comes with rare disease.

And on 30 May, those separate journeys come together.

The awareness day takeover will share stories from the community throughout the day, highlighting not only the medical realities of CPA, but also the resilience, strength and determination of the people affected by it.

Why awareness matters

Rare diseases are often described as “rare”, but collectively they affect millions of people worldwide. Yet many conditions still remain under-recognised, underfunded and misunderstood.

For families living with CPA, simply hearing someone say “I’ve heard of that condition” can feel significant.

Awareness creates visibility.

Visibility creates conversation.

And conversation can lead to change.

Campaigns like CPA Awareness Day help shine a light on experiences that are too often overlooked while also helping to raise vital funds for advocacy, awareness and future research efforts.

Looking ahead with hope

While there is still much work to be done, the CPA community continues to show the power of collective action.

Every shared post, donation, conversation and mile walked throughout May has helped bring greater visibility to a condition that urgently deserves more attention.

Most importantly, it has reminded families affected by CPA that they are not walking this journey alone.

For more information and to support the CPA Research Foundation, please visit: cparfoundation.org and follow the CPA Awareness Day takeover on 30 May.

Because awareness starts with being seen, and every step taken this month has helped move that forward.

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