Cure VCP Disease, Inc. is a patient advocacy organization driving efforts to discover a cure for neuromuscular and neurodegenerative diseases associated with VCP, including IBMPFD, dementia, Parkinson's, CMT, and ALS.
The mission of Cure VCP Disease, Inc., is to unite and fund research while building collaborations and supporting patients within the VCP global community.
The vision of Cure VCP Disease, Inc., is to ensure the availability of treatments and cures while improving the quality of life for patients and families.
We pursue scientific progress with vigor through strategic partnerships and an open science research plan. We believe that patients, clinicians, scientists, and industry should work as a team - all partners and collaborators in discovering a cure by sharing best practices and learning from one another.
Chief Scientific Officer
Board of Directors
ARMELLE PINDON PhD
Armelle Pindon has more than 20 years of experience in academic research and pharmaceutical industry (Janssen Pharma, Johnson & Johnson), leading various drug discovery projects and with a broad range of consultancy missions in Research & Development for biotechnology companies and ultra-rare disease foundations. She received a Ph.D. in Neuroscience from the University of Paris, France, and started her academic carrier at the Myology Institut of the Hospital La Saletriere in Paris. Armelle Pindon is the founder of the Plan For Rare foundation providing low-income rare diseases foundations scientific support and opportunities in research and drug discovery strategy. She is the daughter and the mother of rare disease patients and is passionate about patient education and patient-centered research development. She has been living in New York with her family for the past ten years.
Director of Development
Board of Directors
In the realm of strategic philanthropy, Chip Bryant stands as a paragon of success, embodying a legacy rich with remarkable achievements in fundraising, sales, and management. Over a span of three decades, he has meticulously crafted an illustrious career, blending expertise in relationship-building with innovative strategic planning. His journey saw a pivotal chapter as the Vice Chancellor for Advancement at the University of Tennessee, Knoxville (UTK), from August 2016 to July 2023, orchestrating groundbreaking fundraising campaigns that catapulted the institution to unprecedented heights, accumulating over $1.3 billion in donations.
Before ascending to the role of Vice Chancellor, Chip showcased his mettle in key positions within UTK, steering transformative campaigns and initiatives with adept finesse. His tenure at the Haslam College of Business witnessed the blossoming of pivotal donor relationships, underpinning critical educational and research initiatives. Furthermore, Chip has lent his marketing and relationship- building acumen to the sports industry, notably with Action Sports Media, fostering substantial growth and visibility for collegiate sports programs nationwide.
Board of Directors
Board of Directors
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. As a patient, 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. Fighting the disease everyday gives every aspect of leading the organization more purpose and meaning.
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 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.
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 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
Brandon Feldt of San Diego, California is an undergraduate student and the primary care partner for his mother who has Frontotemporal Dementia (FTD) caused by VCP Disease. In the past six years as her care partner, he has developed skills navigating public benefits, public and private health insurance, and other patient resources. He is intimately familiar with the FTD phenotype of VCP Disease and the effect of the disease as a whole on patients, care partners, and family members. Brandon co-leads our patient support efforts and FTD initiatives. He is dedicated to supporting all affected by VCP Disease while simultaneously assisting the development of a treatment.
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
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.
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.
Medical Advisory Board
Our organization is advised by leading clinical and scientific researchers who are working tirelessly to understand the VCP gene mutation.