Connecting young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life.
To grow into a nationally recognized organization which will address all of the challenges that young adults with rare and chronic conditions face, to furnish a platform for connection, and supply the resources to enable them to thrive.
Seth & Kristina both grew up being different from everyone else. Seth's mother's diagnosis of Huntington's Disease (HD) and Kristina's pediatric diagnosis of Type I Diabetes (T1D) seemed to rob them of their childhoods.
They realized together, as adults, that although their circumstances and conditions were different, they both felt isolated as teenagers; neither of them had peers who understood the everyday challenges of living with or dealing with rare and chronic disease. After recognizing that they both stood out, they were each determined to advocate for themselves and others.
Throughout their own advocacy for others, they found that many young adults with various different conditions had needs that were not being met year-round. Young adults with a rare or chronic disease carry many psychosocial burdens beyond the management of their disease: talking with family, friends, and romantic partners about their health condition, planning for the future (family and career), and finding responsible peer-support. The transition from childhood to adulthood is often full of uncertainty as they begin to take ownership of their future. While some disease-specific patient advocacy organizations have begun to acknowledge the needs of this demographic, currently there does not exist an organization dedicated to providing year-round services for these individuals.
Seth and Kristina are on a mission to continue helping young adults find that social and emotional support, improve their quality of life, and ultimately empower them to take the next step for a better tomorrow.