The Foundation
The RFC1 Foundation is a non-profit 501(c)(3) charity which was founded by a group of individuals either directly or indirectly affected by RFC1-related disorders, CANVAS being the best known at present.
This is the only organization that attempts to serve the needs of patients and families affected by these disorders.
The RFC1 disorders
These disorders interfere with the RFC1 gene and lead to multitude of symptoms that can appear at any time along the course of aging.
One disease that has been discovered is CANVAS Syndrome, which was the first disease attributed to this defective gene. Since that time the understanding of CANVAS has led researchers to further classify this as a RFC1 disorder. The symptoms vary along a continuum, with most individuals having a course that is largely unique to themselves, which makes both diagnosis and treatment challenging.
Why Awareness Matters
Many individuals with RFC1 disease spend years seeking answers before diagnosis. Increasing awareness helps shorten this journey, improves access to supportive care, and accelerates progress toward treatments.
The RFC-1 Foundation works to connect patients, clinicians, and researchers to advance understanding and improve lives.
The who and the why
Board of Directors
Allan Tissenbaum, MD — Founder & President
Dr. Allan Tissenbaum is an orthopedic surgeon based in Pennsylvania with a longstanding interest in patient advocacy, education, and complex neurologic disease. He founded the RFC1 Foundation to advance awareness, research collaboration, patient support, and education for individuals and families affected by RFC1-related disorders, including CANVAS syndrome.
David Palmieri — Vice President & Secretary
David Palmieri provides operational leadership and organizational support for the RFC1 Foundation. He assists with strategic planning, foundation development, and outreach efforts focused on building awareness and strengthening the RFC1 patient and advocacy community.
Eric Perelman, MBA — Treasurer
Eric Perelman has a background in business management and finance and serves as Treasurer of the RFC1 Foundation. He provides oversight of the foundation’s financial operations and supports long-term organizational growth and sustainability.
Michael Zunder, Esq. — Board Member
Michael Zunder is an attorney who provides legal guidance and governance support to the RFC1 Foundation. His experience assists the organization in navigating compliance, organizational structure, and long-term strategic planning.
Alan Heldman, MD — Board Member
Dr. Alan Heldman is a physician with extensive clinical and leadership experience in medicine. As a member of the RFC1 Foundation Board, he supports the foundation’s mission to promote education, research collaboration, and awareness surrounding RFC1-related neurologic disorders.
Heidi Tissenbaum, PhD — Board Member
Dr. Heidi Tissenbaum is a scientist and researcher with expertise in molecular biology and aging research. Her scientific background provides valuable perspective to the foundation’s efforts to support research, education, and greater understanding of RFC1-associated diseases.
Usha Kreaden — Board Member
Usha Kreaden is a technology and healthcare innovator with experience in digital health, patient centered technology, and healthcare strategy. She brings expertise in innovation, communication, and organizational development to the RFC1 Foundation’s mission and future initiatives.
Stephen Gould — Board Member
Stephen Gould has a finance background with specific experience in the use of information technology for commercial and business development. He supports the RFC1 Foundation by providing technical insight and helping guide the foundation’s digital and operational development as it expands its educational and outreach initiatives.