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On January 11, 2018, on the cusp of her 30th birthday, Liya Shuster was diagnosed with a rare form of non-Hodgkin lymphoma. Over the past three years, Shuster has taken the knowledge gained from his experience and channeled it into Alula, a new online resource center to support patients and their family and friends throughout the cancer life cycle, from diagnosis and treatment to recovery and grief.
“When I was diagnosed with rare lymphatic cancer three years ago, my life became completely unrecognizable: everything from my physical and emotional well-being to my finances, to my work schedule and even the way I was. seeing life itself, changed in an instant, ”explains Shuster. “As many cancer patients will tell you, when the doctor comes in and whispers the words, ‘I’m sorry to tell you, but… there is nothing that can prepare you for this moment. And there is little that will prepare you for what is to come.
What Shuster quickly realized was that much of that experience would extend far beyond getting the right curative treatment in the hospital. Beyond the hospital room, no one was helping her organize her life with cancer.
“There was no playbook to explain how I should inform my friends and family,” she says. “There was little advice on how to prepare for the hair loss I suffered as a result of chemotherapy; when it came time to buy a wig, I was unsure of where or how to start buying one. “
Other decisions, such as whether or not to return to the office after a second radiation therapy session of the day, added to the burden. It took a lot of time and work on Shuster’s part, scouring corners of the internet to find information and learn tips through intimate conversations with friends also diagnosed with cancer to feel like he had acquired. the knowledge and resources it needed.
It was this process of learning through her own treatment that inspired Shuster to launch Alula, with the intention of developing a platform that would help other patients feel more prepared than she was.
“The problem was that by the time I had learned everything I needed to know, I had happily completed the treatment,” says Shuster. “The social network effect of cancer is a large and underserved market. With that in
spirit, we built Alula to support individuals, families and friends throughout the cancer life cycle, from diagnosis and treatment to recovery and grief.
Alula is currently assembling a team and a medical advisory committee, which consists of oncologists, nurses, social workers, caregivers and patients nationwide to educate on product safety and strengthen its proximity to the supply medical care.
Shuster points out that caregivers are a particularly important part of Alula’s clientele, as many cancer patients simply do not have the energy to organize the support offered to them throughout their treatment. Alula is set up to provide caregivers with tools to plan with the broader patient support networks, so that patients can focus their own resources and attention on healing. For those who may not have access to this type of support, Alula says she is also developing targeted programs to help these patients throughout the process, in partnership with medical providers.
Slightly similar to a gift registry, Alula hosts a product marketplace, curated by cancer patients and approved by medical experts, with the ability to create custom registries for the items a patient really needs, as opposed to what Shuster describes as motivational socks and pink. blankets.
Each of these products is then approved by Alula’s medical advisory committee. Shuster’s own oncologist, Dr Paul Hamlin, is the first board member, also joined by Dr Brandon Hayes-Lattin, from the OHSU Knight Cancer Institute, and Susan Marchal, director of the outpatient oncology social service in New York – Presbyterian. Shuster notes that Hayes-Lattin and Marchal are cancer survivors and it is important for his team to include people who have been through this experience.
Alula also offers digital tools, such as easy-to-set calendars and spreadsheets, that help cancer patients organize the wave of support from the people who love them, whether it’s finding the right words. for difficult emails or to find a friend or family member. to drive you to the doctor with shareable treatment schedules.
Alula’s original funders include Chelsea Clinton’s Metrodora Ventures, Susan Lyne, General Partner of BBG Ventures, and Andy Dunn, Co-Founder of Bonobos.
“I met Chelsea and her partner, Caroline Kassie, early in my fundraising process, sharing a cup of coffee – back in the days when you still met investors in person,” Shuster recalls. “My conversation with them echoed a theme that came up throughout my fundraising: No one is safe from cancer. What captivated Chelsea about Alula was that it was something she wished she had existed when she wanted to be a better support system for her close friends who are breast cancer survivors.
In the near term, Alula is working to get its platform into patient hands, with immediate plans to expand its digital tools and product offerings this spring.
Also on the horizon, the establishment of partnerships with hospital systems and providers. Through these partnerships, Alula wishes to be able to uniquely improve the standards of oncology care by providing a holistic view of patients’ relationship with cancer while helping physicians, nurses and social workers to better integrate hospital treatment to home care. This includes medical interventions such as over-the-counter treatments and educational tools to better communicate patient side effects and home remedies.
“Dealing with cancer physically is quite taxing, and at Alula we want to make sure that more of the burden doesn’t fall on the patient,” says Shuster, “Our goal is simple: to make cancer less lonely.
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