The Perfect Cancer Resource Didn’t Exist When She Needed It, So This 30-Year-Old Survivor Created Her Own
On January 11, 2018, Liya Shuster-Bier was diagnosed with stage 2 primary mediastinal b-cell non-Hodgkin lymphoma. She was 29 years old. What followed was a long, hard fight that included 800 hours of chemotherapy, 20 radiation sessions, and an autologous stem cell transplant. A little over a year later, on January 22, 2019, Shuster-Bier officially went into remission.
Today marks another milestone with the unveiling of her new company, Alula. Backed by Chelsea Clinton’s Metrodora Ventures, Susan Lyne of BBG Ventures, and Andy Dunn (whose loved ones have each battled cancer), Alula is a marketplace and resource for people with cancer and their loved ones with all the tools they need to navigate their cancer journey. From helping provide the words to tell family and friends, colleagues, and your boss that you have cancer, care calendars, and personalized registries, Shuster-Bier created Alula with everything she wishes had existed after receiving her diagnosis. Here, she shares more about what Alula offers and how she sees it continuing to evolve.
Well+Good: Tell me a little bit about founding Alula. Why was it on your heart and mind as something so important to create?
Liya Shuster-Bier: The concept for Alula arose out of five years of painful, unintended, and unplanned research and development. My mother was diagnosed with breast cancer in January 2016, and a few months after she was finally in remission, I was diagnosed with stage 2 primary mediastinal b-cell non-Hodgkin lymphoma. For both her process and my process, there were so many elements of the cancer experience we were unprepared for. What we’re building at Alula is a radically honest resource to support patients and their loved ones through the entire lifecycle of cancer, through diagnosis, treatment, recovery, and either bereavement or remission.
The term “radically honest” sounds very purposeful to me.
LSB: When you’re going through treatment, you’re collecting information from all these scattered parts of the Internet, across what I call the “ocono-sphere,” a word I created to describe the massive network of clinical help that will hopefully cure you, from oncologists to social workers to nurses. What I mean by “radically honest” is that one of the pillars of Alula is creating content that makes cancer feel less lonely. We’re working closely with patients and practitioners to really target all the moments that you weren’t prepared for and don’t have a plan to navigate.
What are some of the tools Alula will provide for cancer patients in this way?
LSB: One example is a digital tool that serves as a template for how to find the words to announce to your family and family that you’ve been diagnosed with cancer, or you have to tell your boss so you can discuss your medical leave. It’s very customizable to make it personal. You answer a dozen questions and then the tool translates it into an email you can easily copy and paste, and you can of course edit it the way you want, too.
Another example is content related to the cancer experience. I was diagnosed when I was 29, so I didn’t exactly have girlfriends I could ask, “Hey, what did you do when you lost all your hair in two weeks?” or “How did you deal with bouts of incontinence because you’re in medically induced menopause at 29?” But what my friends did do was ransack their networks to connect me to other people with cancer I could talk to. What we’re doing at Alula is building a community where patients can connect with each other and talk about all of these things that make cancer so difficult to navigate.
What about family and friends? Will Alula have resources for them?
LSB: Yes. One is a digital tool that’s a shareable treatment calendar. That way, there’s a digital plan organizing who will come to particular appointments, picking up prescriptions, walking the dog, sleeping over, and everything else that can get disorganized during the course of treatment. Besides digital tools like this, Alula also has guides so loved ones can learn about treatment and how to care for their loved one.
There’s also a marketplace component. What will that have?
LSB: You can create a personalized registry on Alula and also shop for products that are helpful. All the products are curated by cancer patients and approved by our advisory board of medical experts. There’s things like warm blankets and socks, liquid drops to help manage an upset stomach, and products managing the effects of early menopause.
You’ve really thought of everything! How do you hope Alula will continue to evolve in the future?
LSB: The last 15 years of oncology have had unprecedented scientific discovery, which is the reason that I’m even talking to you today and I’m about to celebrate two years in remission for an extremely aggressive, malignant tumor. But where there hasn’t been an investment is helping patients live with the after-effects and side effects of treatment.
I’m celebrating two years in remission, but I’m continuing to battle the effects of my treatment. I’m currently in medically induced menopause at 32. I just got diagnosed with radiation fibrosis from the radiation to my chest and back, which means that the muscles in and around my tumor are slowly decaying. I currently see a cardiologist because I was on a cardiotoxic chemotherapy drug. My husband and I are trying to figure out how and when we can start a family. I want Alula to be a place where people can go for help navigating [life after remission], too.
We’re also continuing to build relationships with hospitals and treatment centers across the country. As the science evolves and advances, our content will evolve right alongside with it.
How are you going to celebrate this incredible launch and your two years in remission?
LSB: My team and I have all been building Alula in our respective living rooms, so I think we’re going to enjoy some time together on a particularly festive Zoom call. After that, I’m excited to just celebrate this moment with my family, friends, and oncology team. There are a lot of emotions with this significant milestone because not everyone makes it. I lost a dear friend to lymphoma over a year ago today. I’m just going to celebrate my breath. I’m going to celebrate the fact that I’m still alive and the fact that I get to dedicate my life to improving the experience of cancer, from diagnosis to survivorship and bereavement.
For more information, go to myalula.com.
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