Advocacy, Visibility and the Right to Set Boundaries

A thoughtful reflection from PKU advocate and storyteller Kevin Alexander raises an important conversation about advocacy, privacy, burnout and knowing when it is okay to say no.

Advocacy often begins with something deeply personal: our own story.

Across the rare disease community, people share their experiences to help others feel less alone, improve understanding, contribute to research, influence change and build stronger communities.

But choosing to share part of your life does not mean giving up the right to keep other parts private.

Being willing to advocate does not mean being available all the time. People can contribute their voices, experiences and expertise while still deciding where their personal boundaries lie.

In a personal article published by PKU Journal, longtime PKU storyteller Kevin Alexander reflects on the less visible side of public advocacy, including the demands of visibility, protecting family privacy, recognizing burnout and learning when to step back.

His reflections raise questions that extend well beyond one person's experience.

Patient and family voices are an important part of the work of CanPKU+. People contribute by telling their stories, volunteering, participating in consultations and research, attending events, supporting other families and speaking publicly about life with an inherited metabolic disorder.

Those contributions matter. So do the people making them.

A strong community should make room for both participation and boundaries. Someone can choose to share their experience without becoming permanently available to others. An advocate can say yes sometimes and no at others. And stepping back does not erase the contribution someone has already made.

People First

For CanPKU+, this is an important reminder that the people who volunteer, tell their stories, participate in research, advocate for change and help others are people first. Their time, privacy and boundaries deserve to be respected alongside the contributions they choose to make.

Read Kevin's Reflection

Rather than retelling Kevin's experience, we encourage members of our community to read his reflection in his own words.