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, Co-founder of KrabbeConnect, holds a Bachelor of Arts degree in Sociology, an Associate's of Science degree, and comes with more than 10 years of experience in the medical and pharmaceutical industry. Stacy’s most recent role at Novo Nordisk involved increasing patient awareness, maximizing growth opportunities for hemophilia products, and educating the community on support services. In 2016, Stacy became the Director of Programs and Administration at the Legacy of Angels Foundation, applying her biotech knowledge and passion to an organization that was created, in part, as a legacy for her daughter and others diagnosed with Krabbe disease. Stacy brings a diverse set of work skills paired with being the parent of Makayla Pike, who lost her life to Krabbe disease in 2003. Stacy resides in Rosemount, MN with her husband Josh and three children, Jack, Allyson, and Ava. She currently serves as the President of KrabbeConnect.
Anne Rugari
Co-Founder, Vice-President and Treasurer
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.
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.
Kyra Wells
Financial Advisor
Kyra holds a Bachelor of Arts in Business Management with a minor in Human Resources. She currently works at Foster Group, a Wealth Management Firm, providing investment and financial advice to individuals, businesses, and organizations. Since her employment at Foster Group, she has obtained her Certified Financial Planner (CFP) designation. In Kyra’s free time, she enjoys being able to impact people on a personal level. During college, she spent time working with at-risk youth and became passionate about it. She is grateful to be part of the KrabbeConnect board, providing financial guidance, to help contribute to the mission and work of the organization. Kyra resides in Des Moines, Iowa with her husband, Mason.
Pat Roberts
Global Liaison
Pat holds a Bachelor of Arts degree from the UK Open University in Politics and Social Sciences. Following the death of her granddaughter, Evie Beth, to Krabbe disease in 2002 and the stark realization that there was absolutely no one in the United Kingdom providing support to patients and their caregivers, Pat founded the organization Save Babies UK (now Krabbe UK). Pat comes to the Board of Directors with nearly 20 years of international experience in the lysosomal disease space. She’s worked tirelessly to expand awareness and research for Krabbe disease in the UK to aid diagnostics, help improve patient services/care, and to assist patients in accessing the best treatment options. Pat is also a member of the UK Lysosomal Storage Disease (LSD) Patient Collaborative Committee which works to provide one voice for LSDs, promotes clinical efficiency, and encourages the sharing of information across the UK. Pat resides in Leeds, UK with her husband Ken.
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.
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
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.
Kevin Cushman
Director/Outreach Coordinator
Kevin holds a Bachelor of Arts degree in Sociology from the University of Wisconsin - Stevens Point. For the past 20 years, Kevin has devoted his time and energy to Youth Ministry. In 2010, Kevin welcomed his first child, Collin. Collin was diagnosed with Krabbe disease at 13 months of age but lost his battle (01/06/19) at the tender age of 8. Currently, Kevin is actively working to add Krabbe disease to the Newborn Screening Panel in Wisconsin. Kevin brings tremendous value to the Board of Directors as he deeply understands the many trials and tribulations families face with Krabbe disease. Kevin hopes he will be someone who can walk along with families throughout every step of their Krabbe journey in his role as an Outreach Coordinator. Kevin resides in Wisconsin Rapids, WI with his wife, Judy and daughter Kendra.