The BDSRA Foundation is proud to welcome four new members to its Board of Directors. Their terms began on January 1, 2026. Learn more about the newest board members below.
Edward R. Harriman, Jr.
Harriman
Ed Harriman is a proud Army Veteran and a very proud father of three children (Megan, Eddie, and Ryan) and grandfather to a new granddaughter (Elizabeth). His daughter, Megan, passed away from Batten disease in 2010. Ed lives in the Boston area and is very excited to join the Board.
A Massachusetts native, Ed is an attorney who currently specializes in Labor and Employment Law. He was awarded an Army R.O.T.C. Scholarship and graduated summa cum laude from Norwich University and the Boston University School of Law. His work experience began with the Army as a JAGC Lawyer, and he has worked at the Boston Housing Authority and in the nuclear, pharmaceutical, and utility Industries. He is also a former Special Assistant United States Attorney and Assistant District Attorney.
Ed is a huge Boston sports fan. His favorite team is the Boston Red Sox, but the New England Patriots are a close second. Ed played three sports in high school and played football in college after playing in a Massachusetts State All-Star Game.
Chris Lowden
Lowden
Chris Lowden, alongside his wife Danielle, has been connected to the BDSRA and Batten disease communities for nearly two decades. He previously served two terms on the Board from 2008 to 2014. Chris and Danielle are parents to two children with JNCL—Eric, who passed away in 2022 at age 27, and McKenna, age 24—as well as two unaffected daughters, Sophia, 19, and Tori, 16. They live in Wake Forest, North Carolina.
After years of focusing on caregiving, running a small business, and supporting their extended family, the Lowdens maintained their involvement primarily through annual donations. As their younger children have become more independent, Chris believed the time was right to rejoin the Board in 2026.
Chris holds a Ph.D. in Medicinal Chemistry from the University of North Carolina and has worked in medicinal and computational chemistry, cheminformatics, and research informatics. For the past 11 years, he and Danielle have operated Workflow Informatics Corp., a consulting firm serving biotechnology and pharmaceutical organizations. He hopes to contribute his experience in drug discovery, entrepreneurship, and advocacy—as well as his perspective as a longtime Batten parent—to support the BDSRA Foundation. Danielle brings deep expertise in caregiving, special education needs, and navigating government services, and they remain committed to serving the community as a team. Chris also lives within driving distance of Washington, D.C., and plans to participate in BDSRA advocacy efforts whenever possible.
Mathias Schmidt
Schmidt
After many years in the pharmaceutical industry, Mathias Schmidt has spent the past decade working with companies focused on lysosomal storage diseases, where he experienced how the hopes and dreams of affected families depend on continued therapeutic progress.
Guided by the principle that all human life has equal value, he is motivated by the belief that no child should be without hope and that families facing progressive, untreatable diseases deserve better options. Mathias is committed to helping advance meaningful change for the Batten disease community.
As the father of two healthy adult sons, he holds deep respect for the parents and caregivers of individuals with Batten disease, recognizing the love and compassion they bring to daily challenges. He also emphasizes that genetics is not a choice of lifestyle—and that some variants limit even the most modest hopes and dreams.
Mathias looks forward to contributing his experience and working collaboratively to make a positive difference.
Ned Timmerman
Timmerman
Ned Timmerman is first and foremost a devoted father to his son Jack, who lives with CLN1 Batten disease. Through Jack’s journey, Ned has become a leading voice for Batten disease awareness and rare disease advocacy in South Carolina—helping to spark a movement of community support, legislative engagement, and shared hope known as Jack’s Pack. His efforts have amplified awareness statewide and inspired others to stand beside families facing unimaginable challenges with courage and love.
Professionally, Ned brings more than a decade of experience in advocacy, public speaking, business development, and market strategy. His career spans both the business and health sectors, where he has worked to advance access, equity, and partnership—particularly in women’s health equality and organizational advocacy. Known for his ability to unite people and ideas, Ned creates opportunities where heart and strategy intersect to drive real-world impact.
Outside of his professional and advocacy work, Ned is a husband to Jaime and father to Jack and twins, Lylah Claire and Judah. He’s also a baseball umpire and lifelong live-music enthusiast.
