Rosenau Family Research Foundation

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Muskego, WI
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.

09/03/2026

How did Dr. Chris Lee get involved with Krabbe disease research, and how did he hear about Rosenau Family Research Foundation’s grant program?

“I was getting interest in Krabbe disease when I was starting my first postdoc back at Mayo Clinic in Jacksonville, Florida. That was my first postdoctoral training, and the project I was working on was related to enzyme replacement in a mouse model called the twitcher mouse, which is one of the most common models in Krabbe disease.

When I first started my lab, I was looking for opportunities for research funding, to support my research. In addition from the government grant from the National Institute of Health, I also found a few foundations that actually provide funding for Krabbe disease research, from the internet, and one of them was The Legacy of Angels Foundation, with is now the Rosenau Family Research Foundation.”

View the complete interview: https://youtu.be/jjGqc4lzxu4

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

09/02/2026

Honored to be a part of ArcStone's fantastic slate of summer work, filming at Dr. Allison Bradbury's lab at Nationwide Children's Hospital in Columbus, OH! Very excited to share the final videos soon.

08/26/2026

Meet Gillian Hauboldt, who, in addition to being on the Rosenau Family Research Foundation (RFRF) Investment Committee, joined the RFRF Board of Directors 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 11-23.

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The RFRF Investment Committee was established in September 2023 to provide recommendations to the board of directors for fiduciary oversight and governance of the Foundation’s investment assets. The committee is not responsible for directly managing investments; rather, it ensures that a sound and secure framework is in place for prudent investment management. The Foundation’s assets are professionally managed by an independent investment manager, Foster Group, under the supervision of the Investment Committee.

Interested in serving on the RFRF Investment Committee? Contact [email protected].

Learn more about our team at rosenaufoundation.org/staff-board-and-committees.

08/24/2026

What drew Dr. Chris Lee towards becoming a scientist and researcher?

"I got interested in science when I was probably seven or eight years old. I always liked engineering and discovery. And as a scientist, I actually love the process of problem-solving, and find it really satisfying to be able to identify important questions, and then be able to design a research plan to solve the questions. I find it really satisfying.”

View the complete interview: https://youtu.be/jjGqc4lzxu4

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

08/10/2026

Meet Bradley Vick, who brings more than 35 years of experience in the financial services industry, establishing a long-standing reputation for knowledge, professionalism, and client-focused wealth management to his role on the Rosenau Family Research Foundation (RFRF) Investment Committee!

Brad holds the Certified Financial Planner (CFP) certification, the Chartered Financial Analyst (CFA) designation, and the Wealth Management Certified Professional (WMCP) designation, reflecting a deep commitment to advanced financial planning and investment experience. He is currently a private wealth advisor with LPL Financial, where his approach emphasizes disciplined planning, informed investment management, and a strong dedication to client relationships.

In addition to being on RFRFs Investment Committee since 2025, Brad is actively engaged in a range of charitable organizations, including Semper Fi & America’s Fund, Zero Prostate, Unbound Global, and Blood Cancer United. His involvement reflects a commitment to giving back and supporting causes that make a meaningful difference in the lives of others.

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The RFRF Investment Committee was established in September 2023 to provide recommendations to the board of directors for fiduciary oversight and governance of the Foundation’s investment assets. The committee is not responsible for directly managing investments; rather, it ensures that a sound and secure framework is in place for prudent investment management. The Foundation’s assets are professionally managed by an independent investment manager, Foster Group, under the supervision of the Investment Committee.

Interested in serving on the RFRF Investment Committee? Contact [email protected].

Learn more about our team at rosenaufoundation.org/staff-board-and-committees.

08/07/2026

The Rosenau Family Research Foundation (RFRF) Investment Committee was established in September 2023 to provide recommendations to the board of directors for fiduciary oversight and governance of the Foundation’s investment assets. The committee is not responsible for directly managing investments; rather, it ensures that a sound and secure framework is in place for prudent investment management. The Foundation’s assets are professionally managed by an independent investment manager, Foster Group, under the supervision of the Investment Committee.

RFRF is looking for individuals for our Investment Committee who are:
- Committed to RFRF’s mission
- Thoughtful in their approach to working with others and challenging the foundation
- Interactive and engaged
- Inquisitive & personable
- Experienced in relevant fields such as investment, accounting, banking, financial planning, corporate finance, or non-profit financial sector

The Investment Committee’s primary responsibilities include:
- Reporting investment performance to the BOD quarterly
- Recommending investment policies for consideration and approval by the board
- Providing recommendations to the board regarding the selection, retention, and evaluation of the external investment manager
- Monitoring financial markets and economic conditions
- Staying informed of regulatory developments affecting investment assets
- Communicating relevant investment updates and insights to the BOD
- Performing any additional duties assigned by the board from time to time

If you are interested in supporting the work of RFRF by serving on the Investment Committee, please email [email protected].

08/05/2026

This month, we are featuring Chris Lee, PhD, who was awarded a $375,000 Rosenau Family Research Foundation grant in 2025 for his project titled “Molecular characterization and pathogenicity assessment of common variants of uncertain significance in Krabbe Disease”, which is studying whether measuring GALC enzyme activity and levels of the toxic substance called psychosine in cells can help determine whether certain genetic changes cause the disease.

RFRF toured Dr. Lee’s lab at the Biomedical Research Institute of New Jersey in 2025 to talk to his team and see where the grant work is taking place.

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

08/03/2026

On July 31st , we honored the passing and remembered the life and legacy of Sue Rosenau, Co-founder and Chief Operating Officer of what was then The Legacy of Angels Foundation, now Rosenau Family Research Foundation.

Sue's tireless dedication and unwavering commitment transformed the rare disease community, creating meaningful, lasting change that continues to impact families today. Her vision, compassion, and leadership remain at the heart of our mission, inspiring us every day to carry her work forward.

We honor Sue's remarkable legacy with gratitude and a renewed commitment to advancing research, supporting families, and bringing hope to those affected by Krabbe disease and Cystic Fibrosis. Her impact will never be forgotten.

07/31/2026

What are both the best and most challenging parts of Natalia Gomez-Ospina’s job?

“The best part of my job is being a physician scientist; the best and the worst. The best part of being a physician scientist is being in the clinic with families and then going back to the lab to work on their issues. I have a very clear vision of who I’m helping. I’m not curing cancer, or degeneration, but I can see those families, so those worlds push each other forward, and Krabbe particularly is very motivating because of the families in extreme need.

The hardest part is the pace. Rare diseases can move very fast in children, and the science doesn’t always move as fast as families need it to. Funding is a constant challenge for diseases that affect fewer people, they get less attention, which is exactly why organizations like Rosenau Family Research Foundation matter so much.”

Dr. Gomez-Ospina was awarded a $375,000 Rosenau Family Research Foundation grant in 2025 for her project titled “Autologous Transplantation of Genome-Edited Hematopoietic Stem and Progenitors Cells for Krabbe Disease”.

View the complete interview: youtube.com/watch?v=enfdTKgYQ5M

Learn more about Natalia’s work: rosenaufoundation.org/gomez-ospina-2025

07/30/2026

What about Natalia Gomez-Ospina’s work gives her hope?

“That fact that it’s working in the lab! We have shown in animal models that gene-edited cells migrate to the brain, that they become functional there, they’re able to deliver the missing protein. And that’s not obvious; for a long time people weren’t sure that this strategy would work that well on the brain. We have also done a lot of work on our genome editing platform, initially developed for other conditions. We know that it works well across multiple conditions. We know that it’s safe, which is the most important thing. And so the biology is on our side, and the question now is translating it into treatment for families that they can actually access, which is a much more complex problem.”

Dr. Gomez-Ospina was awarded a $375,000 Rosenau Family Research Foundation grant in 2025 for her project titled “Autologous Transplantation of Genome-Edited Hematopoietic Stem and Progenitors Cells for Krabbe Disease”.

View the complete interview: youtube.com/watch?v=enfdTKgYQ5M

Learn more about Natalia’s work: rosenaufoundation.org/gomez-ospina-2025

Address

PO Box 371
Muskego, WI
53150

Website

http://www.rosenaufoundation.org/

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