Carolyn Valek

Ohio Regional Support Group & Juvenile-onset Adult (JOA) Warriors

Carolyn Valek is the Support Group Facilitator for Central Ohio and co-facilitates the JOA Warriors, a group for individuals diagnosed as young adults whose diagnoses often affect transitions to adulthood. She began working informally as a patient advocate in 2006 when her late husband and his two sisters were diagnosed. Her son has since been diagnosed with juvenile onset myotonic dystrophy. To learn more about navigating the healthcare system, Carolyn obtained a graduate certificate in patient advocacy and presented at the 2014 MDF Annual Conference. She has also served as a panelist at a women caregiver's session at the 2017 conference. With MDF, Carolyn has lobbied on Capitol Hill twice advocating for more funding for myotonic research. In 2018, she served as a Consumer Reviewer for the DOD Peer Reviewed Medical Research Program.