Introducing Alula: a radically honest hub that makes cancer less lonely
By: Liya Shuster-Bier
Tags: Healthcare, Healthy Lifestyle, Cancer, Female Founders

I founded Alula from five painful years of unwanted R&D. First, as a caregiver. Then, as a patient. And, now, as a survivor, celebrating nearly two years in remission. Today, on my three-year cancerversary, we’re finally launching.

There are few days that divide your life into two parts: before times and after times. For me, January 11, 2018 was one of those days. Flashing back to the morning of my diagnosis, I vividly remember when Dr. Morgan came into my ER room and told me that he had misread my CT scan. Fortunately, the scan didn’t show any blood clots. But, his team had made a grave mistake. They missed an 8 by 10 cm dark spot in the center of my chest: an aggressive tumor.

It actually wasn’t shocking that they initially missed the tumor. Who looks at a 29-year-old presenting in the emergency room with acute chest pain and thinks, “She likely has cancer”? Nobody. It certainly wasn’t on my radar, either. Because when you’re on the cusp of your 30th birthday, cancer is the last thing on your bucket list.

When I received my diagnosis, it was impossible to process anything after the words, “It looks like cancer.” The rest of the conversation was an out-of-body experience. I felt myself floating in the room, staring down at a woman in a hospital gown; I couldn’t process that this woman was me. I couldn’t process that my life was in danger, that I might not make it to my 30th birthday, that I was about to spend a lot more time in hospital gowns. In fact, it wasn’t until my husband, a Harvard-trained cardiologist, looked at the scan and erupted into tears that I started to process that this was not a drill.

I knew things must be seriously bad when that very same day, I was scheduled for a follow-up appointment with a medical oncologist. As I left the relatively safe unknown of the emergency room and drove to a building where a grand piano in the lobby played a somber melody, my first thought was not “why me?” In that moment, I had this crazy sense that I had somehow brought on this cancer diagnosis — by pushing myself to my limits. As people began telling me “Get ready for the fight of your life,” my unspoken response was “Don’t worry, I have that fighting muscle. Maybe that’s what got me here in the first place.”

Liya and her family celebrating her 30th birthday, bald a little earlier than she planned it

My parents and I emigrated from Baku, Azerbaijan in September 1989, when I was 18 months old. We were Jewish refugees who arrived in Brooklyn via the typical resettlement route at the time. Over six months, we traveled from Baku to Moscow, from Moscow to Vienna and Vienna to Rome. In Rome, my father made his case for political asylum and soon, we made our way to Forest Hills, Queens, my hometown.

As the daughter of two young engineers, who left everything behind so their children could grow up in America, academic success was my north star. Like many immigrants who come to this country with nothing, my parents were focused on boosting our family up the economic ladder, and educational attainment was the surest ticket. And so my grind began in kindergarten. I hustled to graduate ESL by first grade. I hustled to ensure my acceptance at a specialized high school in New York City. And I hustled my way into the Ivy League, attending Dartmouth on a need-based scholarship.

Fast forward to my first job after college at Goldman Sachs on their currency derivative trading desk — a prerequisite for any 20-something high-achiever. I got to the office around 6AM and left around 10PM; my eye sockets were so dry I needed glasses even though my vision was clinically fine. After three years at Goldman, I transitioned to impact investing. Working with governors and mayors across the country, I found myself on exhausting business trips to Cleveland, San Francisco and Austin. Then, I decided that I wanted an MBA. I attended Wharton on a scholarship, while traveling to Boston to see my husband. The grind was endless. Six months after graduating Wharton, I landed in the emergency room with a cancer diagnosis.

So, when everyone told me to “ready yourself for battle,” that I’d “conquer cancer,” that “whatever didn’t kill me would make me stronger,” I was starting to doubt that the same fighter mentality that I presumed had weakened my immune system could save me. Nevertheless, I soldiered on. I bought into the idea that cancer is a battle to wage, a war to be won.

Liya and her dear friend Dr. Ritesh Kotecha, celebrating the end of her first six rounds of R-EPOCH therapy

During my two years fighting a rare non-Hodgkin’s lymphoma, I learned that the oncosphere depends on this metaphor for its very existence. Cancer patients are invited to join the fight, as doctors deploy the weapons of war: therapies of varying aggressiveness. Victory is based on statistical projections of life extended, and assessment of the enemy in retreat or remission.

Over the course of my treatment, I endured 800 hours of chemotherapy and immunotherapy infusions, a rapid succession of 20 radiation sessions and an autologous stem cell transplant that required a 100-day quarantine to safely recover. When the first round of treatment failed, and my cancer recurred, my oncologists scaled up their ammunition. The treatment left me so weak that my mother needed to hold me while I showered. It left me so immunocompromised that I wasn’t allowed to take the subway to treatment, or pick up my prescriptions in person, or shop for my groceries, or see my friends if they had so much as a sniffle. I became completely reliant on others for the sheer basics of life.

It’s from this reliance on others that the idea for Alula arose. Our mission is to make cancer less lonely. We emphasize an army of love, not the aggressiveness of battle, and our name invokes the beauty, power and mystery of a bird in flight. The alula is a specialized part of the bird’s wing that aids in take-off, navigation and landing. When a bird raises its alula, considered the bird’s thumb, it creates meaningful lift for the wing when traveling at a slow speed. This clever maneuver helps prevent stalls by maintaining airflow and allowing the bird to gain control during turbulent flight.

Perhaps the most powerful thing about birds’ navigation is how they conserve energy during a migratory season, by flocking together in a symmetric formation. Birds interchange positions in a timely cyclical fashion to share flight fatigue equally. No bird accomplishes the flight alone. They rely on each other for directional support, to make it safely to their final destination.

Liya and Ben celebrating 97 days after her autologous bone marrow transplant

Cancer is the ‘Great Migration’ for humankind. There are close to 17 million cancer survivors in the United States, according to the National Cancer Institute. And 85 million immediate family members act as direct caregivers to those patients. Over 425 million people — coworkers, extended families, and friends — consider themselves an important part of a cancer patient’s global support network. This is not a small population, and yet, the gap between what this massive network needs and what they receive is astounding.

Cancer is one of the biggest killers of humans, rivaled only by heart disease. It’s why billions of dollars have been spent on scientific research towards treatment and cures. It’s why millions of people march, fundraise and shave their heads in solidarity. Cancer treatment adds a windy, complicated path to life, and to stay afloat, we need help. As patients, we simply don’t have the energy on our own. It’s not because we’re weak; it’s because nature intended us to rely on collective strength. That’s why birds navigate together, in a flock.

A cancer patient needs her flock, and also her alula. My Alula is your alula.

Alula is a radically honest resource built with the knowledge I have gained, not just from my own experience, but from those I have met along the way.

When I received my diagnosis, life became unrecognizable — everything from my physical and emotional well-being to my finances, my work schedule and the way I viewed life itself changed in an instant. What I soon came to realize is that the management of side effects and after-effects of treatment persisted outside the hospital room, and that is where it truly became difficult to ask for help. As friends and family heard the news and tried to lend a hand, I lacked the knowledge, time, or energy to ask for what I needed. I also discovered that my cancer — primary mediastinal b-cell non-Hodgkin lymphoma — only afflicts 3,000 women a year in the entire U.S. It took years to find another person to relate to; but over time I met other 30-somethings, all with different cancers but with similar experiences.

Alula’s mission is clear: to support patients, families, and friends through the entire lifecycle of cancer, from diagnosis and treatment to recovery and (sometimes) bereavement. By organizing a revolutionary support system, we can truly transform the patient experience through four key pillars:

Products and Patient Gift Registries When going through treatment, my medical bills made up only 24% of my total cost of care. My amazing friends and family sent fuzzy blankets, books, wine and motivational socks, but what I needed was the right gauze, band-aids and ointments after a surgery, and special shampoos and cleansers for hair loss. Alula’s marketplace of products is curated by cancer patients for these needs and guided by our advisory board of medical experts. From personalized registries to essential “cancer survival kits” organized by treatment type, we focus on patient and caregiver behavior outside the doctor’s office, taking a holistic view of how people live with cancer and helping to ease the burden and cost of care.

When going through treatment, my medical bills made up only 24% of my total cost of care. My amazing friends and family sent fuzzy blankets, books, wine and motivational socks, but what I needed was the right gauze, band-aids and ointments after a surgery, and special shampoos and cleansers for hair loss. Alula’s marketplace of products is curated by cancer patients for these needs and guided by our advisory board of medical experts. From personalized registries to essential “cancer survival kits” organized by treatment type, we focus on patient and caregiver behavior outside the doctor’s office, taking a holistic view of how people live with cancer and helping to ease the burden and cost of care. Communication and Treatment Logistics Tools We’ve built powerful digital tools that help patients and their support system navigate cancer. Whether finding the right words for the hardest email you’ve ever had to write through customizable templates, or finding a friend to drive you to the doctor through sharable treatment calendars, Alula is digitizing all the needs of patients outside of the hospital.

We’ve built powerful digital tools that help patients and their support system navigate cancer. Whether finding the right words for the hardest email you’ve ever had to write through customizable templates, or finding a friend to drive you to the doctor through sharable treatment calendars, Alula is digitizing all the needs of patients outside of the hospital. Resources and Trustworthy Content Alula is a place of truth for how to live with cancer. By centralizing the information you need to know (the kind that I only discovered in conversations between cancer-friends and scattered corners of the internet) Alula is translating the knowledge of others’ lived experiences into an unparalleled, radically honest resource. It’s a club no one asks to join, but one that nevertheless needs a common language and trusted communication between members.

Alula is a place of truth for how to live with cancer. By centralizing the information you need to know (the kind that I only discovered in conversations between cancer-friends and scattered corners of the internet) Alula is translating the knowledge of others’ lived experiences into an unparalleled, radically honest resource. It’s a club no one asks to join, but one that nevertheless needs a common language and trusted communication between members. Partnerships Across the Oncosphere At Alula, we’re uniquely uplifting the standards of onco-care through institutional partnerships with medical providers. In turn, we are able to help doctors understand the impact of medical interventions, such as over-the-counter treatments, in order to help clarify patient side effects and help integrate at-home remedies with oncology protocols.

Liya resting after her first 200 hours of chemotherapy

Today I’m not only celebrating the launch of Alula, I’m celebrating being alive despite the odds. I wouldn’t be sharing this brainchild with you without the care of my oncology team at Memorial Sloan Kettering, led by my brilliant oncologist, Dr. Paul Hamlin and joined by nearly a hundred other physicians, nurses, social workers, psychologists and everyone on floor M7 who helped me survive a high-risk stem cell transplant.

I wouldn’t have made it out of the hospital without my army of love, led by my loving husband, Dr. Benjamin Bier, my sister, my brother, my parents, my-in-laws, our extended family and our chosen family. Each of your messages of support, your sleepless nights, your couch hangs, your motivational socks, your fundraisers, your gift baskets, your ‘get well’ cards with cats on treadmills have inspired every centimeter of Alula.

Alula wouldn’t have been possible without my brilliant founding team, quilted from backgrounds across innovative retail, consumer health and wellness: Amanda Azzinnari (joined from Jetblack), Yoshiko Ono (joined from Maven Clinic), Laamia Islam (joined from Oscar Health), Derek Chan (joined from Care/Of) and Margarita Bertsos (joined from Thrive Global).

And, the support of our amazing investors — Andy Dunn, Susan Lyne and Nisha Dua of BBG Ventures, Chelsea Clinton and Caroline Kassie of Metrodora Ventures, Jared Weinstein of Thrive Capital, Anne Dwane of Village Global, Kate Coughlin of Homebrew, Niv Dror of Shrug Capital, Moshe Lifschitz of Basement Ventures, Matt Harrigan of Company Ventures, Michael Kives of K5 Global, Katie Shea of K50 Ventures, as well as Edith Cooper, Jordan Taylor, Scott Belsky, Cyan Bannister, Fred Ehrsam, Lorraine Buhannic, AJ Frank, Ross Feinstein — and all our friends and family who have believed in this vision.

We’re making cancer less lonely for you than it was for us and we’re not doing it alone.