The KrabbeConnect Board of Directors, formed July 2017, was appointed by Co-founders Stacy Pike-Langenfeld and Anne Rugari with the goal to help bridge the gap between science and patient knowledge. It was vital to the co-founder’s vision that the board represent skill sets in the field of medicine, genetics, education, as well as be seeded with current and former caregivers of Krabbe disease. “No decision is easy when selecting a governing board to fulfill the vision and serve to oversee the accomplishments of the organization’s purpose,” stated Mrs Pike-Langenfeld. Yet, Stacy and Anne believe the current ten directors will drive results and be influential in creating a culture of respect, trust, optimism and candor with researchers, clinicians, healthcare delegates, government officials, and most importantly, the patients and caregivers living with 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 Legacy of Angels Foundation (TLOAF), 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. The key to success in the rare disease space relies on collaboration and sharing resources. Stacy is interested in bringing individuals together and looks forward to the adventure of 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 7 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.
Open Position
Vice-President
KrabbeConnect, a leading nonprofit dedicated to supporting families affected by Krabbe disease, is seeking a passionate individual to join its board of directors as Vice President with a focus on fundraising. As VP, you will play a pivotal role in expanding our financial resources to further our mission of research, advocacy, and support. We’re looking for someone with a proven track record in fundraising, who can bring innovative strategies to the table and foster meaningful relationships with donors and partners. If you’re committed to making a difference in the lives of those impacted by Krabbe disease and have a knack for raising funds, we invite you to join our dedicated team and drive positive change within our community. Email us at info@krabbeconnect.org if you’re interested.
Carlyle Kirbo
Treasurer
Carlyle holds a Bachelor of Business Administration in Accounting from Valdosta State University. Carlyle and his wife, Sloane, first learned of Krabbe disease in 2019 when their three-year-old son, Cloud, was diagnosed with Late-onset Krabbe disease. After fighting for a life saving stem cell transplantTypically this refers to a bone marrow transplant with the goal of replacing non-working cells with healthy working cells. Bone marrow is a rich source of stem cells that have the unique ability to ... for Cloud, Carlyle and his family shifted their focus to educating the public about Krabbe disease, the importance of newborn screening, and improvements that needed to be made to the Georgia Newborn Screening Program. Carlyle brings a wealth of accounting and financial knowledge to KrabbeConnect as well as the unique perspective of being the father of a child who is currently living with Krabbe disease. Carlyle desires to make a positive impact in the lives of all children and families affected by Krabbe disease. Carlyle, Sloane, and Cloud reside in Bainbridge, Georgia.
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.
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 specialized 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 recognized quickly the challenges of early diagnosis and the need for better treatments for this fatal disease. David was active in further educating the public and medical staff through a newborns screening committee at Hunter’s Hope. David, now a parent of two healthy children, wants to make a difference for 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.
Dawn Laney, CGC, CCRC
Director
Dawn is a genetic counselor and long-time advocate for patient empowerment. Dawn’s career path became very personal, nearly ten years ago, when she embarked on a diagnostic odyssey to find the reason for her father’s health issues. Through extensive testing and secondary analysis of whole exome she was successful in providing her father with a diagnosis. Dawn has a master’s degree in Medical Genetics from the Sarah Lawrence College and received her certification from the American Board of Genetic Counseling in 2002. In her work life, Dawn juggles many roles and responsibilities at Emory University; Assistant Professor, Genetics Counselor, Director of the Emory Genetic Clinical Trials Center, Program Leader of Emory’s Lysosomal Storage DiseaseLysosomal storage disorders comprise a group of ~50 metabolic disorders that result from a missing, deficient or lack of a specific enzyme. Center, and member of the Emory Biomedical IRB Committee. Dawn brings an impressive index of genetic expertise and philanthropy to KrabbeConnect. Her most recent success as Founder of ThinkGenetic, Inc. allotted her the lead role in developing a world class genetic diseaseA disease or disorder caused by a pathogenic variant in a gene, most often present from birth. There are ~8000 genetic diseases identified to date. Other types of diseases can be caused by chromoso... infrastructure to support the company’s goals. Dawn is one of the nine original board members and resides in Atlanta, Georgia with her husband, Matt, and her two children, Jacob and Zach.
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 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.
Tammy Wilson
Director | Co-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, MS, C.G.C
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 at Mayo Clinic College of Medicine and Science. Before 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.