Changemakers: Woman’s cancer experiences inspire online resource initiative

Changemakers

In 2018, on the cusp of her 30th birthday, Liya Shuster-Bier was diagnosed with a rare form of non-Hodgkins lymphoma — but her experience with cancer began before that. Before her own diagnosis, Shuster-Bier acted as her mother’s caretaker after she was diagnosed with breast cancer in 2016.

While helping with her mother’s care, Shuster-Bier noticed that locating the necessary products was a lot harder than it needed to be, something that frustrated both her and her mother.

“She would turn to me and ask me ‘Liya, why aren’t these products that we need organized in a singular spot on the internet? Why does it have to be so hard for me to discover what I need as my body is changing? And why aren’t we getting these shopping lists from my oncologist?'” Shuster-Bier explained to PIX11’s Tamsen Fadal.

So, from her hospital bed, Shuster-Bier reflected on her experiences as both a caregiver and patient and conceptualized Alula, an online marketplace and resource with one goal in mind: Making cancer less lonely.

When undergoing her own treatment, Shuster-Bier said friends and family — her ‘love army’ — were ready to get her whatever she needed, but she found she didn’t know what to ask for. While socks, and blankets and new books arrived from well-meaning loved ones, Shuster-Bier was taking on newfound expenses all on her own.

“It was super clear to me that people didn’t know what to send me,” she said. “Meanwhile, I was starting to spend thousands of dollars…and I thought, ‘Gosh, I wish there was a modern way to tell them what I really need.'”

Alula’s goal, she said, is to organize “the products you need to get through any kind of cancer” and make the process less isolating and lonely.

Shuster-Bier told PIX11 that the response to Alula has been overwhelmingly positive.

“We are getting countless messages [like] ‘gosh, I wish we had this while I was sick,'” she said. “I think what people are most resonating with is our radical honesty and our tackling of hard topics and products that aren’t conventional or talked about.”

That ‘radical honesty’ has already captured the attention of Chelsea Clinton’s new venture fund “Metrodora Ventures,” which focuses on health and learning businesses. In fact, Shuster-Bier said Alula was the first business backed by the fund.

“What she loved so much was that we are at the intersection of her investment thesis. We are helping patients feel better [and] weaving patient education in every part of the product,” she explained.

Alula’s name, too, is steeped in meaning: It comes from the part of a bird that allows it to maintain flight even while it’s in turbulent air.

Shuster-Bier, who said she underwent therapy to cope with her fear of dying, chose the name because she thought some anti-cancer messaging made her feel isolated. 

“I didn’t want to name the company in any type of antagonistic position about cancer. There are these slogans about beating cancer and fighting cancer…I felt that didn’t honor the people who didn’t win their battle,” she explained to PIX11.

Instead, the company’s name honors the harsh realities of cancer while still showing that there are ways to get through it.

“You want to lift your alula up,” Shuster-Bier said. “You want to be surrounded by love and have your love army activated, and that’s what we are building toward.”

Shuster-Bier is celebrating more than two years of remission and is dealing with new side effects as a result. She is using her recovery experiences to invent new ways Alula can support other patients through survivorship.

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