Governing Board
A volunteer board of parents, advocates, and clinicians leads our work on behalf of every family affected by ARPKD/CHF.
Colleen Zak
President & Founder
Organizational founder of the ARPKD/CHF Alliance. Her oldest child was diagnosed prenatally with ARPKD and given no hope for survival. She is a passionate advocate and works on behalf of all those affected by this disease.
Michelle Lindemann
Secretary
Michelle's youngest son was diagnosed with isolated CHF at age two during a well-child visit. It took months of testing before a liver biopsy confirmed his diagnosis. He is now an adult. Michelle is a business owner and deeply committed to advancing research for families dealing with ARPKD/CHF.
Rosie Bernardo
Treasurer
Rosie's daughter was diagnosed with ARPKD/CHF at six months of age in 2000. Rosie has a diverse background in Leadership, Business Management, and Human Resources. She has been an ARPKD/CHF Alliance Board Member since 2004.
Emeritus Status
- John Bielefeldt
- Gloria Dengler
- Brian Kopan
- Mark Spier