The KrabbeConnect Board of Directors reflects the founding vision set forth by Co-founders Stacy Pike-Langenfeld and Anne Rugari. Established to bridge the critical gap between scientific advancement and patient understanding, the board was intentionally built to include expertise in medicine, genetics, education, and—most importantly—the lived experiences of current and former Krabbe disease caregivers.
“It’s never easy to select the right individuals to carry forward a mission as personal and complex as this,” said Stacy Pike-Langenfeld. “But it was essential that the board not only bring professional knowledge, but also real empathy for the families we serve.”
Our Board of Directors embodies this commitment, working to foster a culture rooted in respect, trust, transparency, and hope. Together, they aim to drive meaningful progress and ensure collaboration with researchers, clinicians, healthcare leaders, policymakers, and—above all—patients and caregivers impacted by Krabbe disease.
Stacy Pike-Langenfeld
Co-Founder and President
Stacy Pike-Langenfeld organized efforts to form KrabbeConnect in 2017, a public nonprofit foundation working to bridge the gap between science and patient knowledge, and currently serves as the President. Stacy holds a Bachelor of Arts degree in Sociology, an Associate of Science degree, and a minor in Criminal Law. Stacy spent nearly a decade working in the specialty pharmacy and pharmaceutical industry, most notably with Express Scripts, Medco, and Novo Nordisk. In 2016, Stacy left her corporate job to become the Executive Director at the Rosenau Family Research Foundation, a nonprofit private giving family foundation created, in part, as a legacy for her daughter, who lost her life to Krabbe disease at 2 years of age. The family foundation, co-founded by her parents, focused on advancing research in Krabbe disease and Cystic Fibrosis. Stacy stepped down from the family foundation in October 2022 to pursue other interests.
When conversing with Stacy, you will find that she believes no one person, organization, researcher, or medical expert will provide all answers. Collaboration and sharing resources are the keys to success in the rare disease space. Stacy is interested in bringing individuals together and looks forward to finding and gaining solutions to help those impacted by Krabbe disease live a better life. Stacy utilizes her biotech knowledge, her passion for breaking down barriers inhibiting results, and her 8-plus years of management experience to generate synergistic accomplishments. Stacy’s work experience is paired with being the mother of Makayla Pike. Makayla lost her life to Krabbe disease in 2003.
Michelle Salvo
Vice-President
Michelle Salvo is a mission-driven patient advocacy professional with over a decade of experience building connections across the rare disease community and supporting patient-focused initiatives. Most recently, she led Patient Advocacy at Forge Biologics—a gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many biotech acquired by Ajinomoto for $620M—where she played a pivotal role in shaping the company’s advocacy and patient engagement strategy, with a particular focus on its Krabbe disease program.
At Forge, Michelle built and nurtured long-term partnerships with rare disease communities, ensuring that patients and caregivers were meaningfully included throughout the therapeutic
development process. She served as a bridge between cross-functional internal teams and external stakeholders, translating patient insights into strategies that supported clinical,
regulatory, and commercial objectives.
Michelle holds certifications in Patient Advocacy from Professional Patient Advocates in Life Sciences & Sanford Research. She has led and produced meaningful awareness initiatives, including the Krabbe Community Stories, a series of short documentary films that highlight the experiences of families impacted by Krabbe disease.
Prior to her transition into biotech, Michelle spent seven years in operational leadership at Starbucks, where she managed large, high-performing teams and launched community-focused
initiatives—laying the foundation for her people-first approach to advocacy. Her passion lies in elevating the voices of patients and caregivers, driving cross-sector collaboration, and building trust within the rare disease ecosystem.
Michelle resides in Delware with her husband Dan, her 3 children, and their beloved golden retriever, Sadie.
Wendy Zielen
Secretary
Wendy Zielen holds a Bachelor of Arts from the University of Michigan and currently provides financial education to retired public and private sector employers and advisors. Wendy enjoys utilizing her extensive marketing expertise towards many environmental and youth advocacy causes. She currently chairs a statewide youth soccer league and is a board member for a program that gives voice to young victims of trafficking and other abuses. Wendy’s passion for philanthropy was inspired by watching her youngest daughter, Julia, and many others, struggle with Krabbe disease. Wendy resides in Ann Arbor, MI, and serves as the Secretary of KrabbeConnect.
Tammy Wilson
Treasurer
Tammy is a mom of 6 and has over 25 years of experience in finance and bookkeeping. After her two youngest sons were diagnosed with Krabbe disease, Tammy and her husband (David) became passionate advocates for rare diseases and newborn screening in their home state of Oregon. Their third son, Marshall, passed away in 2016 at the age 6 from Krabbe disease. However, their youngest son Michael received a life-saving stem-cell cord blood transplantSee Umbilical Cord Blood Transplant (UCBT). at 4-months of age and is now 13 years post-transplant, disease free and thriving independently. In addition to her bookkeeping business, Tammy has served in the accounting workforce, and as Treasurer for multiple non-profit organizations, bringing a diverse experience from various industries to the KrabbeConnect board. Tammy was appointed to the board in January 2024. When Tammy has spare time, she enjoys creating memories with her family and friends.
Amy White
Director | Scientific Advisory Council Chair
Amy White is a genetic counselor who feels passionate about improving supportive services and care for patients with genetic conditions. At present, she has a role as a laboratory genetic counselor in the Mayo Clinic Biochemical Genetics Laboratory, where she specializes in diagnostic testing of inborn errors of metabolism, communication with physicians and other clinicians, and scientific education and research activities. Ms. White completed her undergraduate degree at Lawrence University and obtained a master’s degree in Medical Genetics-Genetic Counseling from the University of Wisconsin-Madison. She is board-certified by the American Board of Genetic Counseling and a licensed genetic counselor in Minnesota and Wisconsin and has an academic rank as an Assistant Professor of Laboratory Medicine and Pathology in Mayo Clinic College of Medicine and Science. Prior to this, she was a clinical genetic counselor in the Metabolic Genetics Clinic at Children’s Wisconsin for over 12 years. She has been actively involved in newborn screening programs in both Wisconsin and Minnesota for a combined 20 years. Amy’s most recent work has focused on the collection and analysis of data on biochemical analyses in individuals with Krabbe disease. Amy was appointed to the board of directors in January 2024.
Megan Renze
Legal Advisor
Megan Renze holds a Bachelor of Arts in International Relations and Spanish from Augsburg University and a Juris Doctor from the University of Miami School of Law. After several years in private practice at a large international law firm, Megan went in-house with a Germany-based pharmaceutical company specializing in pain. There, she heads up legal affairs for the U.S. and Latin America. She is honored to be a part of the board and utilize her legal and pharma experience to contribute to and further the mission and vision of KrabbeConnect. After many years in Miami, Megan recently relocated to the Morristown, NJ area, where she resides with her husband George, and their two young sons, Georgie and Matteo.
David Cooper
Director
David Cooper holds a Bachelor of Science degree from the University of Wisconsin-Madison. David and his wife, Cindy, were introduced to Krabbe disease after their daughter, Ashley, was diagnosed in 2000. He quickly recognized the challenges of early diagnosis and the need for better treatments for this fatal disease. David previously advocated for newborn screening through a committee at Hunter’s Hope. David, now a parent of two healthy children, wants to make a difference in the future of Krabbe disease by providing support, resources, and critical care information to parents overcome by Krabbe disease. David is one of the original KrabbeConnect board members and resides in Sun Prairie, WI.
Dr. Hina Malik, MD
Director
Hina is a board-certified Internist and completed her residency in upstate New York. In 2014, she lost her son to Krabbe disease and has since been working with the state legislature in Boston to have Krabbe disease added to the newborn screening panel. Hina’s decade of experience practicing clinical medicine coupled with first-hand experience in caring for a child with Krabbe disease brings a unique perspective and outlook to the board. Hina is one of the original nine KrabbeConnect board members and currently resides in the Boston area with her husband, Kashif, and two children, Hamza and Ayzah.
Lesa Brackbill
Director
Lesa Brackbill holds a Bachelor of Arts in Political Science and is currently working toward a Master of Arts in Strategic Communication, both from Azusa Pacific University. Lesa and her husband, Brennan, became involved with Krabbe-related advocacy when their daughter, Victoria, was diagnosed with Krabbe disease in 2015. Using her knowledge and experience, Lesa helped to reform the Newborn Screening program in Pennsylvania, making the program stronger, and because of her efforts, Pennsylvania began screening for Krabbe disease in 2021. Lesa is the Outreach Coordinator for Policy and Advocacy for the LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh Newborn Screening Action Network (LDNBS.org) and is working toward building a coalition with all interested parties as we work toward a world where every baby is screened equally for all possible leukodystrophies. She is also the co-chair of the Krabbe disease Stakeholders group. Lesa is the author of, Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph which chronicles their journey with Krabbe disease and finding hope and joy in the journey. In her “free time,” Lesa is a tour guide at High Point – the home of Milton Hershey – and is raising identical twin boys, Isaiah and Caleb. Lesa and her family reside in Hershey, PA.