#CanDo inspiration: Smartsheet UX designer sets sights on curing son’s rare disease
It was a perfect day for a birthday party — beautiful weather, a well-rested baby, and lots of friends and family gathered around. But as Smartsheet UX Designer Ramya Ramaswamy and her husband Sanath were cutting the Finding Nemo cake for their son Raghav’s first birthday, a phone call came in from Seattle Children’s Hospital.
Ramya and Sanath were simultaneously waiting for and dreading this call since Raghav was only a few hours old, when doctors described him as “different.” On the other line, the doctor told Ramya that they finally found the cause of Raghav’s condition: a mutation in a gene called GPX4.
It’s an ultra rare genetic disorder; so rare, Raghav is the only living person in the world known to have it. Two other babies previously identified with the condition passed away. While it was an answer, they were words no parent wants to hear.
Navigating the diagnosis
Ramya’s coworkers know that she’s a strong person, but these past few months have been humbling and inspiring for them to watch.
“She has transformed from ‘strong person’ to super extraordinary relentless mamabear-researcher-advocate-businessperson-educator — while continuing to be such a valuable contributor to Smartsheet.”
At Smartsheet, we talk about making our platform for “can-do” people, the people who say, “Give me your toughest job and I’ll find a way.” Ramya embodies what it means to embrace “can-do” to achieve something beyond expectations.
“One of my goals after my son was diagnosed was to become the Chief Scientific Officer,” explained Ramya. “‘I don’t know science,’ couldn’t be an excuse. I need to learn the biology behind the problem, at least enough to ask the right questions. Now my time is spent reading research papers, understanding biological pathways in the human body, and learning to spell complex medical terms.”
She single-handedly brought together internationally-renowned researchers, scientists, pharmaceutical companies, and doctors, and they are making huge strides toward finding a cure for Raghav — a cure that will also help kids with other rare diseases live a meaningful life. Their recent collaborative findings have uncovered that a specific genetic replacement therapy will allow Raghav to grow and walk and play and eat and communicate like most kids.
The research, trials, testing, and therapy cost several thousand dollars per week, totalling an estimated $3 million a year. Since Raghav is the only living human with this condition, funding all of this is entirely on his family’s shoulders.
“We need millions of dollars to get to a cure. We raised $200,000 within 48 hours of the diagnosis through a personal GoFundMe campaign. A popular music band in Seattle organized a show and raised $60,000 in a single evening. And we even had support from a Seattle Seahawks player who wore custom-made shoes to support Raghav!”
Since time is of the essence, Ramya and her husband are executing a list of fundraising activities that will continuously feed research, including a hackathon to build technology solutions for the rare disease community and a fundraiser music show in the Bay Area slated for March 2020.
Not surprisingly, Ramya is using Smartsheet to manage work related to Raghav’s research efforts, such as tracking progress, timelines, and budgets for parallel research studies conducted across five different labs in the United States. Her goal is to eventually build a Smartsheet dashboard that serves as a playbook for other rare disease advocates, so they don’t have to reinvent the wheel.
This most recent Giving Tuesday (December 3), Ramya’s story was shared with the Smartsheet employee community and the outpouring of support was incredible.
“I was overwhelmed to see the support that came along, reinforcing that I can do it,” said Ramya. “Some of the employees also generously donated toward Raghav’s research, showing that I am not alone in this fight.”
Achieving the impossible
Regardless of the challenges you’re facing, we hope Ramya’s story will inspire you to keep achieving and make the impossible, possible.
Visit the Cure Raghav page to read more about Raghav’s story, get research updates, and learn how to support him.