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 disease named Krabbe disease. Makayla was just two years old. After Makayla’s diagnosis, they learned that another genetic disease, Cystic Fibrosis, also runs in the family. This is why RFRF includes both in its mission.
During the news conference announcing the Rosenaus 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.
They realized they had an opportunity to have an impact and make some sense out of their granddaughter’s early death by shining a light on this nearly invisible disease by infusing 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 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 2025, seventeen years later, and there is a growing community of support around families and the physicians serving them. Krabbe disease can be detected through newborn screening, which is essential for treatment and several therapies in clinical trials. Therefore, children diagnosed with the disease are living longer at higher rates.
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
RFRF 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.
Heather 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.
