Our Story

Our Mission & Vision


Improving the lives of patients impacted by Krabbe disease and Cystic Fibrosis through research funding and disease advocacy, and helping individuals live life undefined by Krabbe disease and Cystic Fibrosis.

Paul and Sue Rosenau
Makayla
Paul and Sue
Paul and Sue

Our Story

The Rosenau Family Research Foundation (RFRF), a 501 (c)(3), private family foundation was established in 2008 by Paul, and the-late, Susan Rosenau, after winning the Powerball on May 4, 2008. That momentous day coincided with the 5th anniversary of their granddaughter, Makayla Lynn Pike, who lost her battle with a rare-genetic disorder called Krabbe Disease. Makayla was just two years old. After learning of Makayla’s genetic disease, the entire family was tested to learn if they were carriers of the disease. Heather learned that she and her husband are both carriers for another genetic disease, Cystic Fibrosis, which is why RFRF includes both in their mission.

During the news conference announcing the Rosenau’s as the winners of the largest Powerball in Minnesota history, the couple talked about the loss of their grandchild to Krabbe disease. That same day, Krabbe Disease was the most searched topic on Google.

Realizing they had an opportunity to have an impact and make some sense out of their granddaughters’ early death, their faith took over. They knew their lottery winning wasn’t luck, but a direct message from God, about the opportunity for them to shine a light on this nearly invisible disease and infuse funding into research for finding therapies and treatments so no other family had to go through what they did.

The founding name, The Legacy of Angels Foundation (TLOAF), now the Rosenau Family Research Foundation (RFRF), was chosen because at that time, Krabbe Disease was a certain death sentence, taking precious little angels from their parents at such a young age. Fast-forward to 2023, just, fourteen years later, and there is a growing community of support around families and the physicians serving them and Krabbe Disease can be detected through newborn screening, essential for treatment and several therapies in clinical trials meaning children diagnosed with the disease are living longer.

Paul and Sue

Our Vision

Living a life undefined by Krabbe Disease and Cystic Fibrosis

Our Mission

Improving the lives of people impacted by Krabbe Disease and Cystic Fibrosis through research funding and disease advocacy

Our Values

Collaboration
Ethical Decision-Making
Science-Driven

Krabbe Disease – A rare, inherited degenerative disorder of the central and peripheral nervous systems. Krabbe disease is one of a group of genetic disorders called leukodystrophies.

Cystic Fibrosis – A genetic disease that causes a thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults.

Newborn Screening – a vital public health program that’s utilized across many countries to identify various genetic disorders in infants

GabeRFRF is under the leadership of executive director, Dr. Gabriel Cohn who comes to RFRF with more than 30 years of combined experience in academic medicine and industry. His industry experience has spanned rare and genetic disorders as well as investigational biologics including cellular and gene therapy and enzyme replacement therapy. He has led clinical teams in the IND clearance and initiation of several first-in-human gene therapy and infertility clinical trials.

Dr. Cohn is the first non-family member to lead the foundation. Until 2022, the foundation was run solely by family members beginning with Sue and Paul. When Sue lost her life to endometrial and ovarian cancer, the Rosenau sisters stepped in to run the foundation with Paul. Heather as director of finance and Stacy as director of programs, and later as executive director. Paul Rosenau, co-founder, remains the president of the organization and stays involved but is backing away from the day-to-day operations.

HeatherHeather remains with the foundation as director of finance and as a board member. Stacy stepped away from the foundation in 2022 to focus her energy on KrabbeConnect, a nonprofit she co-founded in 2017 to bridge the gap between science and patient knowledge.

RFRF is in transition from being solely family run to growing as an organization that is gearing up for longevity beyond the Rosenau Family’s involvement.

Rare Disease Advocacy

Each day, the board of TLOAF works to provide education, fund research, and participate in advocacy initiatives at local and national levels for both genetic disorders.

Dr. Szabolcs and Dr. Maria Escolar with patient and family