Rosenau Family Research Foundation

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Rosenau Family Research Foundation Improving the lives of people impacted by Krabbe disease and Cystic Fibrosis through research funding Applications are by invitation only. Paul and Sue Rosenau

A Message From the Co-Founders:

We created The Legacy of Angels Foundation in 2008. After the loss of our first grandchild to Krabbe disease in 2003 we wanted to focus our philanthropy on the education and awareness of this disease and help fund research for better treatments and ultimately a cure for Krabbe disease. In addition to Krabbe, we also wanted to help fund research for Cystic Fibrosis. As a result of genetic testing of our children after the loss of our granddaughter, CF was also discovered in our family. Because Newborn Screening is key to early diagnosis and treatment of both diseases, education and support of Newborn Screening complete the philanthropic focus of our family foundation. The Legacy of Angels Foundation is a private grantmaking organization with a preference for leveraged, strategic funding.

10/14/2026

Is there anything Dr. Hara Levy wishes she had known earlier in her career, or advice she would like to give to new researchers?

“Where you train, where you think of working, where you go into a culture is very, very important, and something that I may not have considered. So as you’re looking at what I call partnerships in your life, in terms of your career, where you get educated, or where you work, try to tease out the culture of the company or the organization.

Be true to yourself and your values, and if you believe in something, whether it’s innovative, or controversial, if you truly believe it, then pursue it. Don’t worry about what others think. At the same time, get the best training you can get, so you’re cre dible and that you have the skills to be impactful.”

Watch the whole interview: https://youtu.be/-s-hsE1Z5CI

Learn more about Dr. Levy’s grant work: https://rosenaufoundation.org/levy-2025/

10/14/2026

What are both the best and most challenging parts of Dr. Hara Levy’s job?

“The best part is thinking about a question that’s occurred clinically, and then going to the lab and devising, questions, hypotheses, experiments, and then seeing those published and making their way into patient care. That’s the really cool aspect of what I do, it’s very translational, truly from bench to bedside.

The challenging part, of course, is the layer of administrative paper work, and compliance, and writing grants, and just all the paperwork that’s involved. I would love to just be able to see patients and go in the lab, do my work and publish it, but there’s a whole layer of administrative paperwork which is cumbersome and frustrating.”

Listen to the whole interview: https://youtu.be/-s-hsE1Z5CI


Learn more about Dr. Levy’s grant work: https://rosenaufoundation.org/levy-2025/

10/08/2026

How did Dr. Hara Levy become involved in rare disease research?

“I trained at Children’s Hospital Wisconsin, the Medical College of Wisconsin in Milwaukee, and I distinctly remember, I was a medial student, and two things were instrumental. One, the discovery of the gene for CF [Cystic Fibrosis] in that time frame. When it was discovered, I distinctly remember working as a medical care student in the intermediate care unit, and there were two CF patients, both were teenagers. One had pancreatic insufficiency, were mostly the symptoms they presented with, and the other patient had marked respiratory distress. And I remember thinking, here’s two people with the same diagnosis and markedly different clinical courses, and what does that mean, especially in terms of clinical presentation and treatment? And that was when I was a medical student, and I decided to do a combined internal medicine and pediatrics residency so that I could follow patients all the way through adulthood, which I enjoy doing. And then incorporating my research interests in genetics in epigenomics to look at how we can best predict and treat.”

Listen to the whole interview: https://youtu.be/-s-hsE1Z5CI

Learn more about Dr. Levy’s grant work: https://rosenaufoundation.org/levy-2025/

10/08/2026

What about Dr. Hara Levy’s work gives her hope?

“The patients themselves are amazing. They themselves are very knowledgeable, they’re advocates for themselves. Many of them engage in research, past and future, which may not impact their own lives, but they’re paying it forward.

And I think the fact that there’s more to do and more to learn. Yes, there have been marked improvements with the modulators, but there’s more to do and more to learn, and the Rosenau grant is helping facilitate that.”

Listen to the whole interview: https://youtu.be/-s-hsE1Z5CI

Learn more about Dr. Levy’s grant work: https://rosenaufoundation.org/levy-2025/

10/01/2026

How did Dr. Levy hear about Rosenau Family Research Foundation’s grant program?

“Both of my colleagues and mentors, Michael Rock and Dr. Phil Farrell, have had Rosenau grants in the past, and given the nature of my work and the newness of it, the innovation, and the potential for impact, they recommended that I apply to the Rosenau Family Research Foundation.”

View the complete interview: https://youtu.be/-s-hsE1Z5CI

Learn more about Dr. Lee’s grant work: https://rosenaufoundation.org/levy-2025/

September is Newborn Screening Awareness Month, when we take time lift up the vital role newborn screening plays in givi...
10/01/2026

September is Newborn Screening Awareness Month, when we take time lift up the vital role newborn screening plays in giving babies the earliest possible opportunity for diagnosis and care.

At Rosenau Family Research Foundation (RFRF), advancing newborn screening for Krabbe disease is an important part of our mission. Earlier identification can help families and care teams understand a child’s condition sooner and, when treatment is available, create an opportunity to act when timing matters most.

We’re committed to supporting research that strengthens newborn screening, improves our understanding of Krabbe disease, and helps move us closer to better outcomes for affected children and their families.

09/30/2026

A brief overview of the project that September’s featured investigator, Hara Levy, MD, MMSc, will be working on with her grant funding.

“Rosenau Family Research Foundation has helped support our research on Cystic Fibrosis, looking at airway infections from those with CF from when they’re born through adolescence and young adulthood. Why this important is because the modulator therapies that these patients take have been extraordinary in terms of increasing and improving quality of life, and diminishing morbidity and mortality. However, persons with CF still get airway infections and still have inflammation, even with modulator use. So with this work - which is not perceived ready for primetime, which is why RFRF funding has been so important and impactful - we are looking at chromosome changes in the DNA, and the gene expression, and following this over time in airway infections in persons with CF, to see if they can be biomarkers, prediction markers, or therapeutic targets for airway infections. So we’re thinking that the use of modulators is necessary, but not necessarily sufficient, but we have to look at these airway infections over time, and the host response to that, as the next generation of therapies.”

View the complete interview: https://youtu.be/-s-hsE1Z5CI

Learn more about Dr. Levy’s grant work: https://rosenaufoundation.org/levy-2025/

September is Leukodystrophy Awareness Month, a time to shine a light on a group of rare genetic disorders that primarily...
09/29/2026

September is Leukodystrophy Awareness Month, a time to shine a light on a group of rare genetic disorders that primarily affect the white matter of the central nervous system through abnormal development, maintenance, or destruction of myelin. Leukodystrophies cause a progressive loss of motor skills, balance, speech, vision, hearing, and cognitive function.

Scientists have identified more than 50 leukodystrophies, including Krabbe disease, a rare, inherited neurological disorder caused by changes in the GALC gene, which leads to the buildup of toxic substances and the loss of myelin.

At RFRF, funding research is central to our mission of improving the lives of patients impacted by Krabbe disease. Our grants support investigators working to better understand the disease, improve diagnosis and newborn screening, and develop new approaches to treatment.

During Leukodystrophy Awareness Month, we honor the individuals and families living with these diseases, remember those we have lost, and recognize the researchers, clinicians, advocates, and organizations working every day to move science forward.

09/29/2026

This month, we have been featuring Hara Levy, MD, MMSc, who was awarded a $375,000 Rosenau Family Research Foundation grant in 2025 for her project titled “Enriching CF Newborn Screening Outcomes through a Precision Personalized Medicine Strategy”.

This project seeks to elucidate some of the molecular mechanisms that might explain why children diagnosed early through newborn screening (NBS) have such wide variations in susceptibility to respiratory infections, long-term outcomes, and responses to treatment.

Learn more about Dr. Levy’s grant work: https://rosenaufoundation.org/levy-2025/

We are thrilled to announce the launch of National Organization for Rare Disorders (NORD)’s Rare Research Launchpad!Fund...
09/22/2026

We are thrilled to announce the launch of National Organization for Rare Disorders (NORD)’s Rare Research Launchpad!

Funded by Rosenau Family Research Foundation, the Rare Research Launchpad is a free, self-paced online course for undergraduate, graduate, and medical students, post-baccalaureate learners, and other early-career trainees.

Through Cystic Fibrosis and Krabbe disease, learners explore how understanding disease biology can lead to new treatments, how discoveries move between the laboratory and patient care, and the many career paths and disciplines that contribute to rare disease research. Participants hear directly from researchers, clinicians, and families affected by rare disease and receive practical advice for gaining experience, building skills, finding mentors, and exploring opportunities.

The course also includes a downloadable Research Exploration Toolkit designed to help learners turn exploration into action.

Rosenau Family Research Foundation is focused on advancing research that can improve the lives of people affected by Krabbe disease and Cystic Fibrosis. Supporting NORD’s Rare Research Launchpad allows us to invest in future scientists while giving them a practical understanding of the research questions, career paths, and collaborations needed to advance treatments for the more than 10,000 known rare diseases.

Many thanks to NORD for its vision, dedication and hard work to make this project happen!

Read the press release: https://www.prnewswire.com/news-releases/nord-and-rosenau-family-research-foundation-launch-rare-research-launchpad-to-introduce-students-to-careers-in-rare-disease-research-302879394.html

Learn more about the launchpad and enroll: https://learn.rarediseases.org/courses/rare-research-launchpad/

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PO Box 371
Muskego, WI
53150

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