Paving the Way for New Hope
When Robert and Gabriela Romanow first met with Howard Weiner, MD, director and co-founder of the Partners Multiple Sclerosis Center in the Department of Neurology at Brigham and Women’s Hospital (BWH), they did not know it would mark the beginning of a long journey together.
In April 2014, Robert and Gabriela’s son Max, then a college sophomore, was diagnosed with neuromyelitis optica (NMO), a rare autoimmune disease affecting the optic nerves and spinal cord. Over the next three years, Max experienced sustained periods where he lost his vision, had severe eye pain and had to take high doses of steroids and toxic medications.
Max’s diagnosis, however, also began to pave the way to bring new hope to all NMO patients.
Determined to move research forward, the Romanows committed themselves to finding unique ways to spread awareness about NMO and raise money for the cause. “We are dedicated to finding a more specific and less toxic treatment for NMO,” shares Gabriela. “Since this is a rare disease, finding more effective treatments and perhaps even a cure, requires as much support from non-industry sources as possible.”
The Romanows were committed to funding a credible, patient-focused researcher. The NMO community led them to Weiner, who is nationally recognized for his expertise in NMO. While Max does not receive treatment at BWH, it was clear to the family from the start that supporting Dr. Weiner’s work was a terrific opportunity to advance NMO research here at home in Boston.
“When we met Dr. Weiner, he told us he had an idea about a potential treatment for NMO. We were eager to help him get started,” recounts Robert. The project started as just an idea and now, only two years later, the research team, led by Dr. Tanuja Chitnis, is building the foundation to bring their study to trial. Things are moving forward at a steady pace. Dr. Weiner’s work has given the Romanows hope and has inspired them to want to do more.
As a result, the Romanows have made several gifts, including three charitable gift annuities, to support the research Weiner and his team are conducting. In the fall of 2018, the Romanows also hosted a fundraising event at Brae Burn Country Club in West Newton. Family and friends joined to raise awareness about NMO research at BWH. The event raised over $275,000 to support Dr. Weiner and his colleague Dr. Tanuja Chitnis, the director of the translational Neuroimmunology Research Center. Without the Romanow’s funding, research in this area would not be possible.
“There is so much more work to be done,” admits Robert. “We really hope that people will be inspired to support Dr. Weiner’s research. It is one of our most important goals.”