Darlene Royalty 

“Darlene has been a valuable source for educating, understanding, and supporting our team at BDSRA. She cares deeply about the Batten community and the organization, and it was at the core of everything she did. To me, that is living the mission, and I am grateful for the five years I have worked with her.”

–Amy Fenton Parker, BDSRA Foundation President & CEO

Fernanda Leal-Pardinas

“Fern, you have brought a wonderful professionalism, dedication, and passion to our organisation over the past three years, adding immense value to everything we do. It has been a joy to work with you — thank you for being a wonderful colleague and incredible advocate for our Batten community. Wishing you all the very best as you embark on your next chapter.”

–Ineka Whiteman, PhD, BDSRA Foundation Head of Research & Medical Affairs

Fernanda (Fern) Leal-Pardinas, MD, MSc, became acquainted with the lives of children and families living with Batten disease when she worked as a Global Medical Director for the Brineura (enzyme replacement therapy for CLN2) program at Biomarin. She later became the clinical development lead for the CLN1 and CLN7 gene therapy programs at Taysha Gene Therapies and learned more about the differences between the different types of NCLs and the important unmet medical need for all of them.

Although she left Taysha, she desired to remain connected with the community that had left an indelible mark on her heart. Secondly, her willingness to contribute her professional and personal experiences to improve the lives of people living with Batten disease led her to join the BDSRA Board in 2023. It was a natural fit, and we are grateful for her time.

Fern served on the Science and Research Committee of the Board during the development of the Centers of Excellence program and the Batten Disease Global Research Initiative. These programmatic accomplishments were long-held goals, and we are grateful for Fern’s dedication in helping to create them. Fern finishes her term at the end of 2025.

Darlene Royalty was the Office Manager for Frericks Gardens, Inc., in Quincy, Illinois, with extensive bookkeeping skills when she joined the BDSRA Board in 2015. As a mother of three children with Batten Disease who had all passed away, Darlene brought a unique and passionate perspective to the board. She was dedicated to building up chapter support and working to increase membership. Little did she know the changes she would face ahead.

In 2016, Darlene was elected as secretary of the organization. During that term, a Strategic Planning committee would be formed, and the association would transition from a chapter-member organization to a self-appointed board and national organization. Soon after, the board searched for a new Executive Director as well.

Darlene became Chair of the BDSRA Board in January 2020. She and the Executive Committee immediately navigated through the challenges of COVID-19, the switch to a virtual Annual Family Conference, and another search for a new Executive Director. Together, they worked to put the Strategic Plan into action.

Under Darlene’s leadership, the Executive Committee met monthly, and new committees were created as needed. The Support Committee helped to plan the family conferences and virtual programming throughout the year. New staff and board members brought new ideas and a rebrand of the organization.

The Memorial Wall became a virtual “scrapbook” tribute to those lost to Batten disease, featured not only at the Annual Family Conference but on the website as well. The long-awaited Science Officer was hired, and the Centers of Excellence program was created. Research grants put on hold by COVID went back to work, and the new Batten Disease Global Research Initiative (BDGRI) was established and provided more than $260,000 to Batten researchers from around the world.

Darlene spent countless hours on the Annual Family Conferences, planned all board meetings, served and chaired several committees, and was a tremendous help to the staff. Although her time to serve on the board has come to an end, she has vowed to volunteer in any way she is needed and plans to remain involved in the Memorial program.

BDSRA Board and Staff are grateful for the service of Fern Leal-Pardinas and Darlene Royalty, and we hope to keep them close in the Batten community.