Growing up with a rare disease made life’s transitions from youth to adulthood especially challenging for Daniel in his education through middle school and high school, and in finding a career that allowed him to balance his condition while maintaining a job. He often had to advocate for himself in both school and work until just three years ago, when he found an ally in the TS Alliance: An organization that provides support for people living with TSC by funding research programs and providing various resources to the community.
One of the first events Daniel attended was the TSC Community Picnic near Seattle, Washington. There, he met with other families living with TSC and was introduced to regional leadership from the TS Alliance. “It was an empowering and uplifting experience,” Daniel said.
Since then, he has traveled far and wide as an advocate for TSC, attending events and raising funds in the U.S. and around the world. He is now the Auxiliary Adult Regional Coordinator West for the TS Alliance, where he supports regional events that advance the organization’s commitment to the TSC community. He is also a member of the LGTBQ community, and is engaged in finding fellow rare disease advocates within the community.
Few people can have the same perspective on both rare disease and adoption like Daniel. He understands the value and challenges of adopting a child with a rare disease and for him it comes down to this: “You’re bringing home a person that needs a home. There’s always going to be someone waiting for a family.”