Mission Statement

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Read our 2020

Annual Report

Cure VCP Disease, Inc. was formed to drive efforts to cure diseases related to mutations of the Valosin Containing Protein gene.  This includes the disease Inclusion Body Myopathy associated with Paget’s disease of bone and Frontotemporal Dementia (IBMPFD).  The specific objectives of our organization are:

  1. to provide global education and awareness of VCP diseases to doctors, researchers, industry, patients, caregivers and the general public;

  2. to develop and maintain a global patient registry of VCP disease patients;

  3. to develop and maintain a fundraising vehicle to support awareness and education efforts;

  4. to collaborate with other global organizations and entities which are promoting a cure for diseases which have symptoms similar to VCP diseases;

  5. to sponsor, host and/or participate in events and activities that promote efforts to cure VCP diseases.

Board of Directors

NATHAN PECK

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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. 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

Treasurer

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.

AMY CASEY

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Board Member

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

BRANDON FELDT

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Board Member

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

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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.

MARUEEN MCARTHUR HART

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Board Member

Most recently the Director of Research and Strategic Advisor to the Medical and Scientific Advisory Boards at Global Genes. Maureen recently left Global Genes to pursue new opportunities and will bring a wealth of connections to research organizations and industry in rare disease research. She has extensive connections to rare disease advocates for research, care and support, and public policy.  Maureen possesses a PhD in Public Policy and Public Administration, Science and Technology Policy from The George Washington University, a MS in Science and Technology Studies from Virginia Tech, and a BS in Biology from UCLA..  

DAVID KAMINSKY

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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.

BRYAN VAN BRUNT

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Board Member

Bryan Van Brunt of Florida is the owner and president at Van Brunt Law Firm, P.A. - a Tampa, FL-based government contracts and business law firm.  Prior to founding Van Brunt Law Firm P.A., Bryan served as the Deputy General Counsel and Senior Director of Contracts for General Dynamics Ordnance and Tactical Systems for over 13 years.  As a member of Cure VCP Disease, Inc., he is committed to helping with an organized effort to bring the interested parties together, including patient groups, medical professionals, pharmaceutical companies, nongovernmental and government entities to attack this disease.  Bryan possesses a JD from the Florida State University College of Law.

Medical Advisory Board

Our organization is advised by leading clinical and scientific researchers who are working tirelessly to understand the VCP gene mutation.

GERALD PFEFFER, MD, PhD

Assistant Professor at University of Calgary, Department of Medical Genetics
 

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MING GUO, MD, PhD

Professor of Neurology and Molecular and Medicinal Pharmacy at UCLA David Geffen School of Medicine

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VIRGINIA KIMONIS, MD

Professor and Clinical Geneticist-Scientist at University of California-Irvine, Department of Pediatrics

TAHSEEN MOZAFFAR,
MD, PhD

Professor of Neurology at University of California-Irvine

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CHRIS WEIHL, MD, PhD

Professor of Neurology

  at Washington University School of Medicine in St. Louis