Staff, Board, and Committees

Amanda is a certified Project Management Professional (PMP) with experience in health policy research, clinical research solutions, and medical affairs. Amanda has worked with numerous pharmaceutical and device companies to provide research and operational solutions, giving her experience in oncology, vaccine, neuro, and rare disease.

She has extensive experience with the various government and health policies that are embedded into the complex reality of accessing treatment, as well as having first-hand experience interviewing surgeons, hospital administrators, nurses, care coordinators, and nursing home staff in order to obtain a comprehensive understanding of how policies can affect those most in need of care.

Amanda has extensive experience designing and executing practical ways to connect patients to treatment options and supporting them along the way.

Marci Sontag is the Director Center for Public Health Innovation. She has a Ph.D. in Epidemiology and an M.S. in Biometrics from the University of Colorado Health Sciences Center.  Dr. Sontag has studied pediatric clinical outcomes and newborn screening systems since 1995, with a particular focus on cystic fibrosis newborn screening.

Marci brings knowledge and experience in epidemiology, data analysis, program development, facilitation, and program evaluation.  She has spent much of her career studying the epidemiology of cystic fibrosis, the airway microbiome, and other pediatric genetic disorders.  Her passion is to help improve the public health field by applying innovative solutions to common problems and partnering with public health stakeholders at the local, regional, and national levels.

Gillian Hauboldt joined the RFRF board in 2022. She works as a senior accountant with Michel M Koscinski CPA in New Berlin, WI.

Gillian holds a B.S. in Accounting and holds a CPA license. She has been working in public accounting with non-profits for over 25 years. While her specialty is tax and accounting she sits on several board of non-profit organizations and has also dabbled in grant writing.

When she is not working, she enjoys spending time with her six children ranging from ages 8-20.

Heather comes to RFRF with more than 10 years of corporate experience in finance.  Her understanding of capital banking and cash management activities, proficiency with financial reports and data, plus her knowledge of investments and forecasting of budgets, will be essential in safeguarding the economic structure of the foundation.  Heather, the youngest daughter to co-founders Paul and Sue Rosenau, brings a wealth of passion to the foundation.  Her life was impacted by genetic testing revealing her as a carrier of two autosomal recessive conditions, Krabbe disease, and Cystic Fibrosis; she lost her niece, Makayla Pike, to Krabbe disease in May 2003.

Heather was appointed Finance Director for the Rosenau Family Research Foundation in March of 2018.

In Heather’s spare time she finds great joy in being a mom of twin girls and a sports-driven son. When she’s not busy with the family, Heather enjoys reading, baking, boating, and getting together with family and friends.

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 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.

Anne enjoys traveling, spending time with her oldest son and his family, boating, fishing, walking the beach, and playing with her grand dogs.

Nick Pilger is brand new to the RFRF board in 2025. He 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.

Outside of work, Nick enjoys spending time with his wife, 2 young children, and the rest of his extended family. When the WI weather allows you can be sure to find him on the golf course whenever he gets the chance.

Greg is currently Associate Director of Molecular Biology at Precigen Therapeutics, where he leads research programs developing next-generation gene and cell therapies. Previously, he was a Scientist at Denali Therapeutics, where he helped advance a small molecule therapeutic program from the lab bench into clinical trials. Over the past 25 years, he has built a career that bridges academia and industry, with expertise spanning neuroscience, immunotherapy, biologics, and drug development. Greg received his Ph.D. in Neuroscience from Johns Hopkins University School of Medicine.

During his postdoctoral work at UCSF, Greg discovered the underlying mutation in a novel Krabbe disease mouse model. He and his wife later established a small research group at OHSU in Portland, Oregon, where they continued to investigate the molecular mechanisms and disease processes of Krabbe disease using this model. As part of this work, Greg’s group received a research grant from the Legacy of Angels Foundation (now RFRF), funding that was instrumental in supporting their lab. He remains grateful for that support and is honored to return to the Foundation as a Board member. Greg brings a combined scientific and industry perspective to support strategic planning and to help accelerate therapies for rare diseases.

Outside of work, Greg enjoys running, tennis, pickleball, science fiction books and movies, and spending time hiking and exploring the outdoors with his family.

Zac’s first experience with Krabbe Disease was in 2000 when his brother, Trevor, was diagnosed at 10 months of age with early infantile Krabbe Disease. Though he was only 6 years old when his brother passed, an advocacy journey was sparked. For the better part of the next 25 years, annual family vacations were spent at medical symposiums learning more about Krabbe Disease, summers were spent hosting “Trevor’s Tournament”, a charity softball tournament raising money for scholarships for those going into the medical field to raise awareness for Krabbe Disease, and any free other free time was mostly spent advocating with state representatives on expanding newborn screening.

Zac’s educational background includes a Bachelor’s degree in Kinesiology and Master’s Degree in Healthcare Administration. After years of service on the Kansas Newborn Screening Advisory Council and a short stint in local public health, Zac took over as the program manager for newborn screening in his home state of Kansas. 3 years later, Zac was presented with an offer to transition as program manager for newborn screening for the state of Iowa and help lead a quad-state collective of screening programs including North Dakota, South Dakota, and Alaska.

Dr. Gabriel Cohn joined RFRF in October 2022 and serves as both Executive Director and Medical Director. Dr. Cohn is a licensed, board-certified Clinical Geneticist and Obstetrician Gynecologist with more than 30 years of experience in academic medicine and the biotechnology industry and has contributed to the development of multiple therapeutics for the treatment of rare genetic disorders.

In addition to his role at RFRF, he serves as the Chief Medical Officer (CMO) at iECURE, Inc., a biotech company focused on developing gene editing therapies for rare genetic diseases. He previously served as the CMO of Homology Medicines where he led the company’s Phase 1/2 gene therapy and gene editing clinical programs in PKU and MPSII. Prior to that, Gabe was Vice President of Clinical Development at AVROBIO, where he led the ex-vivo gene therapy program for Gaucher disease and Pompe disease, and had served in various executive leadership roles at OvaScience and Shire. Since 2017, he has supported and led the successful IND and CTA submissions across five different cell and gene therapy indications and platforms.

He is a Fellow of the American College of Genetics and Genomics (ACMG) and the American College of Obstetrics and Gynecology (ACOG), author of more than 40 peer-reviewed publications and chapters and served as the Chief of Clinical and Reproductive Genetics and Medical Director, Genetic Services at Baystate Medical Center and as Assistant Professor at Tufts University School of Medicine.  He earned his M.D. from SUNY Health Science Center at Syracuse and MBA from the Isenberg School of Management at the University of Massachusetts Amherst. Amherst, MA. He completed a residency in Obstetrics & Gynecology at SUNY HSC at Syracuse, NY and a fellowship in Medical Genetics at the National Institutes of Health in Bethesda, MD.