Danae Bartke

Danae’ was diagnosed with Homocystinuria (HCU) in 1995 at the age of 10, after her younger brother’s lenses became dislocated, prompting a diagnosis for the entire family. She experienced numerous complications due to late diagnosis, a lack of information, and challenges with treatment adherence. These experiences inspired her to explore and connect with patient organizations supporting those with inborn errors of metabolism.

In 2011, Danae’ discovered the PKU Organization of Illinois and began actively participating in its community events. Through this organization, she was finally able to connect with others living with HCU. That same year, she attended a national conference on HCU in Denver, Colorado, where she met other patients and families, as well as researchers and advocates committed to the metabolic community.

In 2014, she joined the Board of the PKU Organization of Illinois. From 2014 to 2015, she served as the editor of the PKU Press, the organization’s seasonal newsletter. In this role, she was responsible for developing flyers, writing articles of interest to the metabolic community, and curating event updates, tips, recipes, and more. In 2016, she was elected President of the PKU Organization of Illinois. As President, she oversaw the Board of Directors and took part in every committee to gain a comprehensive understanding of each operational area. She led fundraising and educational initiatives aimed at supporting individuals and families impacted by rare metabolic disorders.

In 2016, Danae’ traveled to Prague to attend the first Methylation Defects Patient-Expert Meeting. There, she had the opportunity to meet with world-renowned researchers, global patient organizations, and other affected families. It became clear that there was a critical need for a dedicated U.S.-based organization for Methylation Defects. Upon her return, Danae’ partnered with fellow advocate Margie McGlynn to lay the foundation for what would become HCU Network America.

Since March 2017, Danae’ has served as the Executive Director of HCU Network America. In this role, she works full-time to increase awareness, provide educational resources, support research, and build community for those affected by HCU and related disorders across the country. 

She continues to make change working with the Global Genes Rare X HCU Registry in order to enhance and update the information available to HCU patients, caregivers and medical providers via natural history data collection.

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