February 12, 2025
Rosenau Family Research Foundation (RFRF) is excited to announce that it has added three new Directors to its board: Anne Rugari, Teri Cannon and Nick Pilger.
“The addition of these exceptional members has expanded both the breadth and depth of knowledge on the RFRF Board of Directors,” said RFRF Executive Director, Gabriel M Cohn, MD, MBA. “Their expertise and perspective will be crucial in guiding RFRF in its efforts to improve the lives of patients impacted by Krabbe disease and Cystic Fibrosis through research funding and disease advocacy.”
ABOUT THE NEW DIRECTORS
Anne Rugari was first introduced to Krabbe disease in 1986 when her infant son was diagnosed after months of neurologic decline. In 1999 she had a daughter that was diagnosed at two weeks of age, becoming the fourth newborn in the world to receive a transplant for Krabbe. Anne’s diverse experiences along with her passion to advocate for better treatments has given her opportunities to work with many Krabbe disease stakeholders to assist in moving the science forward.
Anne’s journey with Krabbe disease led her to establish Partners For Krabbe Research (2012) and she is the Co-Founder of KrabbeConnect (2017). She is the Consultant for the Brain and Tissue Bank (2015), working with families wishing to donate their loved one’s brain and tissues for research.
She has been involved with supporting families and caregivers as a patient engagement manager; written two children’s books about rare disease; was chosen Rare Disease Difference Maker by Engage Health and is a Consultant/Advocate in the rare disease community.
Teri Cannon is joining the RFRF Board as the Associate Director of A Breath of Hope Lung Foundation. She brings 34 years of nonprofit fundraising and patient advocacy experience to her board service having learned from executive leadership positions at the National Multiple Sclerosis Society, Leukemia & Lymphoma Society, Children’s Minnesota Hospital, and Greater Minneapolis Crisis Nursery. Teri’s past board roles have also been with community health charity organizations.
Nick Pilger currently works as a Development Director in the Foundation at Children’s Wisconsin where he works closely with some of SE Wisconsin’s most generous healthcare philanthropists.
Nick holds a B.S. in Nonprofit Management and Human Resources from the University of Minnesota – Carlson School of Management where he formerly served on 2 alumni boards for many years. Professionally, Nick has been working in the nonprofit sector for over 15 years, serving in numerous fundraising leadership roles for healthcare and higher education organizations both in Minnesota and Wisconsin.