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
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.
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.
Marissa Anderson
Director
Marissa received her Bachelor of Science degree in Kinesiology from Michigan State University in 2015. She is currently pursuing her Masters in Developmental Disabilities with emphasis on Child Life, Early Intervention, and ABA from Nova Southeastern University. Marissa currently works as a behavior technician providing Applied Behavior Analysis (ABA) therapy services to children in-home with autism spectrum disorders. Marissa’s inspiration for her career path came from her brother Matthew, who died of Krabbe disease in 2006 at 18 years old. Marissa knows first-hand how an illness like Krabbe disease impacts the whole family thus has immense passion to make a difference in the lives of all affected by Krabbe disease. Marissa is one of the original nine members of KrabbeConnect and resides in Michigan with her husband, Taylor.
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.
Michelle Leeker
Director
Michelle, holds a master’s degree in Education and brings 17 years of experience in raising awareness to Krabbe disease. Michelle’s passion for Krabbe disease developed after her son, Trevor, was diagnosed with the disease at 10 months of age. She became a member of the Kansas Newborn Screening committee and aided in the expansion of their program to what it is today. Michelle and her husband, Bill, have made it their life’s mission to share their son’s story and expand education on Krabbe disease through the Trevor Leeker Scholarship Fund. Michelle currently teaches third grade at Baldwin City school district, is a mom of two healthy children, Zac and Hope, and is one of the nine original board members for KrabbeConnect.
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.
Dolan Sondhi
Ph.D.
Dolan is a Research Professor at Weill Medical College of Cornell University, has a deep interest in the clinical development of gene therapy for childhood neurodegenerative diseases. After earning her undergraduate degree in New Delhi, India, she pursued a Ph. D in Chemistry at Brown University in Providence, RI. Dolan then ventured on to complete her post-doctoral fellowship in biomedical research at Rockefeller University prior to being appointed as a faculty member in the department of Genetic Medicine at Weill Medical College. In her 18 years at Cornell, Dolan’s research in gene therapy has ranged from the development of a basic research program to phase I/II clinical trials with patients. The primary focus of her work relates to developing therapies for neurodegenerative. Dolan’s work has been published in numerous peer-reviewed journals and she’s had the honor of presenting at many national and international scientific meetings. Dolan became involved in Krabbe disease upon invitation to present her work and expertise on clinical translation at the Krabbe Translational Research Network (KTRN) meeting. Since that time, she has been involved with the KTRN and provides guidance to the consortium based on her extensive experience in the field. Dolan is an active board member and resides in New York City with her husband and her 15-year-old daughter.