Her cause: Pitt Hopkins Syndrome (PHS), a rare disease characterized by intellectual disability and developmental delay that affects an estimated 250 people worldwide

Who inspires her to give: Her 7-year-old son, Victor, who was diagnosed with PHS at age 2

How she’s making a difference: In 2010, Pauca, a former special ed teacher, and her husband joined forces with two other families to raise money to support PHS research. Two years later, Pauca co-founded the Pitt Hopkins Research Foundation (PHRF) with Audrey Davidow Lapidus whose son, Calvin, also has PHS. The foundation has raised $487,348 (including $30,000 the Paucas helped raise before the organization was founded) and given $364,000 in grants. Recently awarded grants are helping scientists at Harvard University and the University of Alabama at Birmingham research medical treatments for PHS, none of which currently exist.

The Paucas also started an international support group that has connected nearly 300 people from across the US and Europe and as far as Japan and New Zealand. This year, PHRF is celebrating the first International Pitt Hopkins Day on Sept. 18; the date was chosen because PHS is caused by the mutation or deletion of the 18^th chromosome. PHRF will also host its first conference, bringing together mothers of children with PHS, in November in the Pauca’s hometown, Winston-Salem, NC.

Her mantra: “I decided a long time ago I could be bitter or better, and I choose to be better.”