Our Team
Meet our Staff, Board of Directors and Advisory Boards.
Staff
Our organization is powered by a professional staff dedicated to our mission of finding a cure for VCP disease and improving the lives of our patients.
ZOLLIE YAVAROW PhD, MA
Director of Scientific Engagement and Collaborations
Dr. Yavarow is a science communicator and patient advocate dedicated to centering the patient perspective in pharmaceutical development and regulatory decisions. She earned both a PhD in Pharmacology and a Master of Arts in Bioethics and Science Policy from Duke University. She trained as a Postdoctoral Fellow at COMBINEDBrain and has collaborated with various rare disease organizations including The E.We Foundation, Cure LBSL, TESS Research Foundation, and USHER 1F Collaborative.
Brandon Feldt
Development and Partner Relations Coordinator
Brandon Feldt, based in San Diego, California, is an undergraduate biomedical sciences student and the primary care partner for his mother, who has Frontotemporal Dementia (FTD) caused by VCP Disease. For the past decade, Brandon has been his mother’s primary caregiver, gaining extensive experience navigating public benefits, health insurance (both public and private), and other crucial patient resources. His deep understanding of the FTD phenotype linked to VCP Disease, along with the broader impact on patients, care partners, and families, makes him a vital advocate in the community. Brandon is now channeling his knowledge and experience into developing and securing sustainable funding for Cure VCP Disease. His efforts are focused on ensuring long-term financial support for basic science research, translational therapy programs, and drug screening initiatives that are critical to advancing treatments. By leveraging his unique insights as both a caregiver and advocate, Brandon is dedicated to creating meaningful progress in the fight against VCP Disease.
Board of Directors
Our Board of Directors is a passionate group of professionals dedicated to establishing the mission, providing direction, and supporting the programs of our organization.
NATHAN PECK
CEO
Nathan Peck of Georgia possesses a Bachelor of Industrial Engineering from the Georgia Institute of Technology as well as a MBA and Masters of Civil and Environmental Engineering from the Massachusetts Institute of Technology. In January 2018, he formed Cure VCP Disease, Inc. along with a passionate group of IBMPFD patients, caregivers and researchers. Through Cure VCP Disease, Inc. he is committed to bringing together patients, caregivers, researchers, pharmaceutical companies, other non-profits and investors to identify treatments and ultimately a cure for this rare, genetic disease.
AMY CASEY
Secretary
Amy Casey lives in Eastern Iowa and is a wife and a mom of four. She is a clinical dental hygiene educator at Kirkwood Community College and the University of Iowa. As a patient, Amy is a strong supporter of community within the rare disease population and co-leads our patient support groups. Mental health, as it relates to physical health, is an area that Amy is passionate about. Coming from a family with many members affected by VCP disease, Amy has vowed to continue to work towards a treatment or a cure, not only for the current generation but for generations to come. Amy feels she owes it to her family members who have passed on to be involved in Cure VCP Disease. We are stronger together, and Amy is dedicated to helping drive efforts towards a treatment or cure.
ALEXIS ELDER
Board Member
Alexis Elder is an Executive Vice President & Global Client Leader at Edelman, a global communications firm. She received her Master’s of Science in Public Relations from Syracuse University and her Bachelor’s of Arts in English at Georgetown University, and also serves as a Board Member of March of Dimes’ Massachusetts chapter. Alexis met her husband, a VCP patient, while living in London, and they are focused on doing everything they can to enable better care, treatment options and ultimately a cure for VCP disease. Now based in the Greater Boston area, Alexis and her husband enjoy trips to the beach and all that the outdoors has to offer with their two young children, Bayley and Lachlan, and cat Philip.
DAVID KAMINSKY, PhD
Board Member
Currently VP, Group Scientific Director at Razorfish Health, a next generation healthcare professional advertising agency. In his role, David leads scientific and medical strategy teams in the development of communications and resources for pharmaceutical clients. He works with big and small data, drugs in development and drugs approved by the FDA, and HCP and patient audiences across numerous therapeutic areas. David possesses a PhD in Microbiology and Immunology from Temple University, a MS in Exercise Science, Immunology from Appalachian State University, and BS in Dietetics from Florida State University.
ALLISON PECK
CFO
Allison Peck of Georgia is a graduate of Georgia Tech with a bachelor’s degree in Industrial Engineering. She started her career as a Manufacturing Engineer and Project Manager with National Instruments in Austin, TX. She has continued her professional experience with website design and small business management. Allison has a wealth of experience leading volunteer organizations including the PTO, a backpack food program, and community non-profits. As the treasurer, website designer, and project manager, Allison is committed to doing everything in her power to aid in the effort to help her husband, Nathan, find a cure to VCP Disease.
SARA BUHR
Board Member
Sara Buhr lives outside of Denver, Colorado and is an Executive Director of Development for the University of Denver. She has a master's degree in nonprofit administration from the University of San Francisco and a BA in public relations from Pacific Lutheran University. She is a third generation VCP patient in her family and is committed to finding a cure for the next generation. She enjoys life in Colorado and international travel with her husband, John, and boys, Griffin and Beckett.
KELLY GOLD
Board Member
Kelly Gold is the Chief Business Officer at CAMP4 Therapeutics, a biotechnology company focused on identifying RNA-based therapies for the treatment of rare and neurodegenerative diseases. Prior to joining CAMP4, Kelly worked in corporate finance at Biogen, where she was the finance leader for rare disease business unit and sat on the program team responsible for the approval and launch of Spinraza, the first approved therapy for Spinal Muscular Atrophy. Prior to Biogen, Ms. Gold worked in Deutsche Bank’s healthcare investment banking group. She began her career designing infectious disease research facilities. Kelly holds degrees in biochemistry and mechanical engineering from Queen’s University in Ontario, and an MBA from the MIT Sloan School of Management. Kelly is originally from Edmonton, Canada and currently lives with her husband and three children in Atlanta.
MAUREEN MCARTHUR HART, PhD
Board Member
Maureen McArthur Hart is a patient advocacy, public policy, and communications leader with experience in structuring biomedical research collaborations with engagement of multiple stakeholders, accelerating biomedical innovation, ensuring ethical conduct of research, and developing outreach materials to varied audiences. She is the Director, Patient Advocacy, Public Policy, and External Engagement at Creyon Bio, a member of the voluntary PRA/ICON Rare Disease Advisory Council, and a member of the Scientific Advisory Council for Uplifting Athletes. Previously, she was a strategic advisor with Global Genes, working with the Medical & Scientific Advisory Board on projects focused on science and technology issues related to rare disease research and therapy development, developing content for major patient advocacy meetings, and leading efforts to connect rare disease researchers and patient advocates. Prior to joining Global Genes, Dr. Hart served as a researcher with the Science and Technology Policy Institute on strategic planning projects for translational research, bioinformatics, and clinical trials, and on program evaluation for the National Cancer Institute and the National Institutes of Health. She also has led the development of policies to protect human research subjects and public outreach projects on biomedical research at the University of Kentucky. She earned a PhD in public policy from George Washington University, an MS in science and technology studies from Virginia Tech, and a BS in biology from UCLA.
Medical Advisory Board
With a focus on improving the lives of patients, these expert clinicians advise our organization on clinical care, diagnosis, and clinical trial readiness.
LINDSAY ALFANO, PT, DPT, PCS
Nationwide Children's Hospital
Columbus, Ohio
TAHSEEN MOZAFFAR, MD
UC Irvine
Irvine, California
NUPUR GHOSHAL, MD, PhD
Washington University
St. Louis, Missouri
GERALD PFEFFER, MD, PhD
University of Calgary
Calgary, Alberta Canada
VIRGINIA KIMONIS, MD, MRCP
UC Irvine
Irvine, California
CHRIS WEIHL, MD, PhD
Washington University
St. Louis, Missouri
Drug Discovery Scientific Advisory Board
Each with a unique research background, these brilliant scientists graciously provide their input, skills and knowledge on programs related to drug discovery, science and medicine.
MICHELLE ARKIN, PhD
UC San Francisco
San Francisco, California
DONNA HURYN, PhD
University of Pennsylvania
Philadelphia, Pennsylvania
TSUI-FEN CHOU, PhD
Caltech
Pasadena, California
YASMINE DJELLAS, PhD
Global Medical Affairs
UCB - Antwerpen, Belgium