In my role as the executive director, I am pleased to announce this exciting change for our organization. After 15 years, you may be wondering, why the change now and what does it mean for our organization? Three key insights surfaced from our strategic planning process, driving the rationale for the name change.

Focus on Research

It is important the new name reflects the research focus of our mission and draws attention to that focus. The new mission was approved by the board in 2021.

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

Providing Hope

The Legacy of Angels Foundation (TLOAF) was chosen because, in 2008, when the foundation was founded, Krabbe Disease took many precious little angels from their parents at such a young age. Fast-forward to 2023, just fifteen years later—there is a growing community of researchers, physicians, parents, and advocates dedicated to advancing early detection through newborn screening, new therapies, deeper knowledge, and several new investigational products in clinical trials. In addition, family support services and advocates are dedicated to creating a world undefined by Krabbe Disease This means increased hope to so many families as children diagnosed with the disease have options for treatment and are living longer.

Honoring the Rosenau Family

Finally, TLOAF was founded by the Rosenau Family. It is a labor of love committed to ensuring no other family had to experience the grief and loss as the Rosenau’s did. As we continue to evolve and non-family members become a more integral part of the inner workings of the foundation, it seemed fitting to honor the Rosenau’s legacy in the foundation’s name.

As the first non-family leader of the organization, it is a privilege to help lead the Rosenau Family Research Foundation into the next phase. The future is promising and we aim to help the field’s greatest minds harness the latest technologies, leverage the latest scientific advances, and employ the most novel and innovative approaches to dramatically enhance our knowledge and improve the lives of those impacted by Krabbe disease and cystic fibrosis.

We are excited about our new website and look forward to featuring the great work being done by this community to advance rare disease research and help families live undefined by Krabbe Disease and Cystic Fibrosis.

Gabriel M Cohn, MD, MBA, FACMG, FACOG
Executive Director
Rosenau Family Research Foundation