Romal Mitr, now 14, first heard about rare diseases in her seventh-grade biology class at Quarry Lane School in Dublin, and she wanted to learn more.
"The teacher spent very little time discussing rare diseases, and I found out there was so much to it," she recalled.
Now a high school freshman at Quarry Lane, Romal has combined her love of science and her fascination with filmmaking to create "No Matter How Rare," a seven-minute documentary that has been accepted into an international film festival that focuses on rare diseases.
"I found the art of making a documentary really appealed to me, to convey a straightforward message," said Romal, a Dublin resident. "To me, it is important to share a story and provide different perspectives."
Her film showcases the journey of Jesse Marimat, who has battled a rare blood disorder since he was 10, and has turned toward advocacy to connect with others like himself.
"He is in his 20s to 30s, and it wasn't until they could do gene sequencing that they found his diagnosis," Romal said.
For the film's promotional poster, she chose the image of a zebra.
"Every zebra's stripes are different," Romal explained. "Every rare-disease person faces something different. The zebra highlights the beauty of each one."
There are 7,000 rare diseases in the United States, which affect one in 10 people.
"When you string them all together, they make quite a large percentage of the population," Romal noted.
Research for rare diseases does not receive the same amount of funding as those that are more widespread, such as cancer, she pointed out.
"But a life is a life," she said, "and rare diseases are rather under-represented in funding."
When Romal heard about the Race for 7 in Dublin, part of an international effort to promote awareness of the 7,000 known rare diseases, she knew she had to attend. She and her older sister Rhea made a promotional video to encourage participation throughout the community.
"I've always from a young age loved the art of movie making," Romal said. "On family vacations we would take pictures, and immediately I'd collect them, string them together, add music and make a video."
At Race for 7, Romal met Jesse Marimat, who shared his struggle with congenital dyserythropoietic anemia.
"I approached him after the event," Romal recalled. "He expressed his willingness to shoot the documentary."
After researching spots in San Francisco where Jesse lives, Romal chose to film the interview with him at Shakespeare Garden in Golden Gate Park. She and her crew of family members headed across the bay, where she interviewed Jesse and shot footage of the city.
"Jesse also shared many pictures to give us a glimpse of what he went though, getting blood transfusions every three to four weeks," Romal said.
Jesse's favorite quote is: "Life isn't a race to beat the clock. It's a journey to beat the odds."
"This fit very nicely with my theme," Romal said. "People need to slow down and recognize the people who live with these hardships."
She used a time lapse of scenes on Market Street to illustrate this.
"I meshed it all together, and stitched it," Romal said. "First I have the introduction and included some medical clips with music in the background. Toward the middle I included the segment with Jesse. Then I wrapped it up with the conclusion."
"I planned everything way ahead of time," she added, "the scenery, the medical imagery, the time lapse of Market Street."
Once the film was completed, Romal looked for a way to get it seen.
"It wasn't just to get recognition, it was more that I wanted to share this message of representing the rare-disease community," she said. "I strive to spread it to inspire and to impress upon the audience to take action, whether with advocacy or any small steps."
She was thrilled when her entry was selected for "Disorder: The Rare Disease Film Festival," which chooses inspirational films made around the world that will touch the hearts of audiences. It was started by two dads of children with ultra-rare diseases who wanted to show others their challenges.
The festival, being held in New York in November after it was postponed from May due to the coronavirus crisis, also promotes collaborations to reach cures and treatments. This year's filmmakers include Academy Award-winning director Ross Kaufman and Academy Award-nominated Polish filmmaker Tomasz Sliwinski for his Oscar-nominated short documentary.
The festival will bring back popular selections from previous events, which took place in San Francisco in 2019 and Boston in 2017. Academy Award-nominated actress Mary McDonnell narrates the documentary "Menkes Disease: Finding Help & Hope." Academy Award-nominated actor William H. Macy narrates "This is Michelle," on the rare disease Epidermolysis Bullosa.
"I will be one of the youngest filmmakers there," Romal said.
She plans on a career in science or a medical field but for now is focused on sharing the touching stories she finds.
"I joined RDLA – Rare Disease Legislative Advocates – as a youth adult representative because I want to not only spread the message but to made legislative changes," Romal said. "People write articles, which are very touching, but the versatile medium of film encourages people to share these journeys."