New London native an advocate for people with cleft

Born with a cleft lip and a cleft palate, 30-year-old Ellen “Ellie” Mador has endured a lifetime of corrective surgeries ― 18 to be exact.

The experience has helped turn her into a fierce advocate for access to health care and for the cleft community. When Cleft Con 2024, a global conference bringing together individuals, families and health care professionals, convenes Saturday in Houston, she’ll be among the speakers.

Mador, a New London native who graduated from St. Bernard School in Uncasville, said she expects to relate her personal story; her experiences on Capitol Hill, where she’s lobbied lawmakers on behalf of the Ensuring Lasting Smiles Act; and her work to raise funds for international cleft care.

In its 25 years of existence, Smile Train, the nonprofit that sponsors Cleft Con, has funded 2 million cleft surgeries through partnerships with local health care workers.

Mador, a volunteer member of Smile Train's Young Leadership Circle Board and Cleft Community Advisory Council, has a fundraising goal of $7,500, enough to provide about 30 people in developing countries with free cleft surgeries.

“We need to build awareness,” Mador, a daughter of state Sen. Martha Marx, D-New London, said in a phone interview from Boston. “People don’t know about the challenges cleft people face. A lot of diseases and conditions have a ton of funding and awareness, but facial differences don’t. .... People feel isolated.”

Concerned about her looks, Mador didn’t get comfortable with her condition until she was in her mid-20s. It was then she joined some Facebook groups with cleft people and learned about Smile Train and Cleft Con.

“Last summer, I decided to go to Cleft Con in New York City,” she said. “I had never been in a roomful of people with cleft before. I was blown away by the quality of it. I was so glad I jumped in. I had been missing out.”

Mador’s congenital defect and her family’s efforts to get insurance to pay for treatment set her on a path toward advocacy. She studied political science and public health at The George Washington University in Washington, D.C., and earned a master’s degree in public administration at UMass Boston.

Having recently moved to New York City, she works remotely for the Massachusetts Health Policy Commission, an independent state agency that monitors health care spending.

Mador, the youngest of four children, was the only one of them born with a cleft condition, most cases of which are believed to be caused by an interaction of genetic and environmental factors. Mador’s case was revealed before her birth by an ultrasound.

The condition requires surgeries to close openings in the upper lip or palate or both. In some cases, hearing loss, dental problems and speech difficulties also must be treated.

“It’s unique in that it’s a birth defect affecting the face,” Mador said. “It comes with psychosocial challenges.”

According to the U.S. Centers for Disease Control and Prevention, about one in every 1,600 babies is born with both cleft lip and cleft palate. About one in every 2,800 babies is born with cleft lip without cleft palate, and about one in every 1,700 babies is born with cleft palate.

Mador first underwent surgery to close the gap in her lip when she was 5 weeks old. It took five surgeries to fully close her palate.

When she was 18, her father’s insurance at first declined to cover the cost of surgery on her jaw, prompting Mador’s family to seek U.S. Sen. Richard Blumenthal’s help. A Connecticut law requiring insurers to pay for such a procedure didn’t apply in Mador’s case because her father’s employer’s plan was self-insured, Mador said. As such, the plan was governed by federal law.

Marx, Mador’s mother, recalled Blumenthal intervened and managed to get the operation covered.

“It ignited my political career,” Marx said of the incident.

b.hallenbeck@theday.com