Voices for change in a village of rare disease advocates, part 3

Last in a series. Read parts one and two.

In rare disease advocacy, the voices we often hear belong to patients — those who live with the condition every day. But there is another group standing just as firmly behind them: caregivers. Their role is vital, their insight invaluable. They offer stability in chaos, encouragement in fear, and strength when patients feel most vulnerable.

In this final part of our series, we meet Janet Brown — Sheena Standingbear’s wife and Arabel Standingbear’s other mom. While Janet didn’t grow up with hereditary angioedema (HAE), she married into it. And when the diagnosis entered her family’s life, she didn’t hesitate, but jumped in headfirst, becoming an advocate in her own right and showing what it means to show up every day, in every way.

Excepts from our email exchange follow, with light editing for clarity.

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From left, Janet Brown, Sheena Standingbear, and Arabel Standingbear are all HAE advocates. (Courtesy of Sheena Standingbear)

HA: What was your understanding of HAE before you met your spouse and daughter?

JB: I had never heard of HAE before.

How did your perspective on HAE change after becoming part of a family living with the condition?

Sheena did not know she had HAE until we had been together for a couple of years. Sheena’s diagnosis lead to Arabel’s diagnosis. I’ve never lived with a rare serious illness patient before [so] it has taken adjustment in understanding goals and limitations for us all.

What role do you play in advocacy efforts, and how do you support your wife and daughter?

I advocate officially and unofficially. I educate people about the disease regularly. I try to help as much as I can with supporting them. The desire and forward motion of advocacy happened as we figured out that this would be the only way we were ever going to move forward with therapy and [a cure] for HAE.

Janet Brown and other HAE Association advocates tour U.S. Representative Emilia Sykes’ office on Capitol Hill during Rare Disease Week 2025. (Courtesy of Hollie Amadio)

Have you had any eye-opening or emotional experiences while advocating for HAE?

The [U.S. Hereditary Angioedema Association National Summit] and Rare Disease Week on Capitol Hill blew my mind. I met so many people with the same stories as Sheena and Arabel.

What has been the most rewarding aspect of being an HAE advocate and caregiver?

The most rewarding thing is figuring out how to make life [with] HAE better for Sheena, Arabel, and all the HAE patients out there in the world. It has been amazing to see the HAE community come together for the common good of all, including advocating for therapies, cures, and mental well-being. It has been great to understand that we were not alone.

How do you think caregivers and family members can be better included in HAE efforts?

I think just recognizing that it takes a village to solve such large problems. It’s OK for everyone to lean on each other and work together to make [life with] HAE better for everyone.

What advice would you give to someone marrying into a family affected by HAE who wants to be a strong advocate?

Be prepared to be patient and understand that emotions will run high. It’s worth it in the end to make the world a better place for your loved ones.

***

From left, Janet Brown, Arabel Standingbear, and Sheena Standingbear visit the U.S. Botanic Garden in Washington, D.C., during Rare Disease Week 2025. (Courtesy of Sheena Standingbear)

That’s the heart of caregiving and advocacy alike — choosing to show up, even when it’s hard, because love demands it. Janet’s story is a powerful reminder that advocacy isn’t just for those living with the diagnosis; it’s also for those who love them. Caregivers carry the weight, stand in the gaps, and raise their voices, too. They are often the bridge between patients and the rest of the world, and keeping that bridge strong is essential.

A diagnosis doesn’t just change one person’s life; it shifts the rhythm of an entire household. There’s power in quiet advocacy, too — in conversations, in presence, in persistence. That kind of connection is what transforms advocacy from a duty into a community. Caregiving can be isolating, but community makes all the difference.

When patients and caregivers join forces and push for change, the rare disease community becomes even stronger and impossible to ignore. Every voice in advocacy matters. Whether it’s a mother fighting for answers, a daughter stepping into her own power, or a caregiver offering quiet strength, each perspective adds something vital to the rare disease movement.

I had the privilege of witnessing these incredible women in action during Rare Disease Week, and they truly are a dream team. Getting to know them on a personal level confirmed what was already clear: They are amazing advocates and even more remarkable humans.

Sheena shows us that even the most personal battles can spark powerful movements. Youth advocates like Arabel prove that age doesn’t define impact, just as Janet reminds us that you don’t need a diagnosis to make a difference. Real change happens when we show up, not just for ourselves, but for one another. Now more than ever, our community needs voices willing to speak up, share boldly, and push for progress.

So, no matter how you are connected to the cause, your voice is powerful — and it’s needed. The time to raise it is now.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.