San Antonio businessman and father to lead rare disease foundation

A San Antonio business leader and father has been named Board President of the Cornelia de Lange Syndrome (CdLS) Foundation, a national nonprofit dedicated to advancing research and improving care for individuals affected by this rare genetic disorder.

Rob Rodriguez, the local Whataburger COO, assumes this leadership at a time when rare disease research is gaining new momentum in healthcare and biotech. Celebrating its 45th year, the CdLS Foundation joins forces with top scientists and medical centers to drive genetic breakthroughs and stand beside families navigating complex medical and developmental journeys.

For Rodriguez, the Foundation’s mission is deeply personal. His daughter, Camille, known as Cami, passed away at age 11 in 2007 due to complications from Cornelia de Lange Syndrome. Through Cami’s involvement in research, the Rodriguez family became part of a nationwide community of scientists, clinicians, and families united by hope and discovery. Inspired by her legacy, Rodriguez emerged as a passionate advocate and fundraiser, rallying support for the Foundation’s cause.

“At first, we think our special children are solely here for us to take care of them, but over time, we realize something deeper: we have it backward. They are actually here for us, to teach us, to grow us, to help us become better versions of ourselves,” Rodriguez said in a video to the CdLS community.

As Board President, Rodriguez will help chart the Foundation’s course, focusing on expanding research collaborations, strengthening clinical partnerships, and launching new initiatives to improve data collection and accelerate discoveries for rare genetic conditions. His appointment highlights a growing movement of business leaders lending their expertise in governance, strategy, and operations to nonprofits tackling some of healthcare’s most complex challenges.