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 is seeking FDA approval to test their compound for clinical trials. 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 two charitable gift annuities, to support the research Weiner and his team are conducting. Without the Romanow’s funding, Weiner’s research in this area would not be possible.
In addition to the family’s generous gifts, Max’s college fraternity sponsors a fundraising event called Puppy Palooza. His Sigma Phi Epsilon fraternity brothers at the University of Miami borrow puppies from a local shelter and ask students to pay to play with the animals, among other activities of the day. The first Puppy Palooza took place in 2015 and raised more than $6,000 for NMO research. The event is now in its third successive year, and the Romanows are pleased to match all funds raised through the fundraiser.
Since his initial diagnosis and treatment, Max’s health has stabilized and his dreams for a full life are coming true. An aspiring attorney, he will begin law school in the fall of 2017. “I feel like the luckiest kid in the world,” says Max. “I could not dream of a better support team. My vision has returned and I have not experienced a relapse since 2015.”
“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.”