The KrabbeConnect Board of Directors, formed July 2017, was appointed by Co-founders Stacy Pike 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 Ms. Pike. 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.
Anne Rugari
Co-Founder and Vice-President
Anne, Co-founder of KrabbeConnect, is an accountant by trade but most of her career has been focused on Krabbe disease since her son, Nick was diagnosed in 1986 and her daughter, Gina in 1999. In 2010, Anne founded Partners For Krabbe Research (P4KR), a 501 (c) (3) foundation designed to increase awareness and to support research to improve the lives of those born with Krabbe disease. Anne and P4KR worked diligently with the University of Pittsburgh Medical Center and Dr. Maria Escolar to help create the NDRD Brain and Tissue Bank. Anne currently serves as a consultant for the Brain and Tissue Bank, helping families who wish to donate to the biorepository to advance research for Krabbe disease. Anne’s parent perspective and experience with two affected children, one transplanted and one without, coupled with her collaborative efforts with leading clinicians and researchers in Krabbe disease is vital. Anne resides in Dunedin, Florida near her son Phillip, his wife Stacy, and her grandson, PJ. She is currently the Vice-President and Treasurer of Krabbe Connect.
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 transplant 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 Disease 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 disease 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.
Carol Ogg, BS Pharm
Director
Carol is a licensed clinical pharmacist with over two decades of industry experience dedicated to helping patients living with lysosomal storage disorders. Carol’s experience also includes working at the Lysosomal Storage Disease Center at Emory University. In 2014, Carol harnessed her skills and passion and started her own rare disease consulting firm providing robust education materials for companies around the globe. Carol is the author of several books in the field of lysosomal storage disorders. Carol brings a unique perspective to KrabbeConnect from her work in the biotech industry, her passion working with patients living with LSDs, and her global connections. Carol is one of the nine original board members and resides in Atlanta, Georgia with her husband, Scott, and her daughter Lauren.
Kasey Feldt
Director
Kasey holds a Bachelor of Science degree in human services and psychology. She currently works as a family advocate at a children's Head Start center. In 2019, Kasey and her husband, Alex, welcomed their first child, Dawson. Dawson was diagnosed with early infantile Krabbe disease and peacefully passed on November 8, 2020, at 15 months of age. Kasey is currently fighting for Krabbe disease to be added to the Newborn Screening panel in the state of Virginia. She will not give up until it has been added. Kasey and Alex have partnered with KrabbeConnect to start a family-advised fund called, "Dawson's Drive to Save Lives." This fund will be utilized to raise funds to help support the patient assistance program at KrabbeConnect. Kasey brings a wealth of knowledge to KrabbeConnect as a Krabbe disease caregiver coupled with her work experience as a family advocate. Kasey and Alex currently reside in Franklin, Virginia.
Mary Meisner
Director
Mary Meisner holds a Bachelor of Arts in Elementary Education, with a long career in teaching underprivileged students and adults in treatment centers and in at-risk programs. For the past 20 years, Mary has been “Grandma” to Belle, who was diagnosed with Krabbe Disease and transplanted at 17 months of age. In her “dual” role of mothering a daughter whose child has Krabbe and her relationship with her granddaughter, Mary brings a unique caregiving perspective of providing love and support for both daughter and granddaughter. Mary resides in Edina, Minnesota with her husband Andy.
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 Leukodystrophy 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.