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Cure VCP Disease

Mission Statement

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
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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. 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.

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SUJATA PATEL

Secretary

Sujata Patel, of Ohio, is a Registered Pharmacist, and graduated from the University of Toledo with Honors in Pharmacy Practice. She is a Certified Functional Medicine Practitioner, Reiki Master Practitioner and Chopra Center Certified Instructor for meditation and yoga. Sujata merges Eastern and Western practices to help heal the body and mind as a whole. Sujata is currently the owner of Wellness with Sujata, LTD., a health and wellness practice designed to help clients take control of their total health and well-being by balancing their bodies, transforming their minds, and empowering their spirits. Sujata’s passion to help find a cure for VCP Disease comes from multiple family members who have the active disease as well as asymptomatic VCP gene mutations. She is dedicated to connecting with and supporting patients, caregivers, researchers and clinicians in order to facilitate finding a cure for VCP. 

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MARUEEN MCARTHUR HART

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..  

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DAVID KAMINSKY

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.

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JEANNIE MACALUSO

Board Member

Jeannie Macaluso lives in the Palm Beach, Florida area.  Five years ago, she was diagnosed with the VCP gene mutation after many years of being misdiagnosed.  She led a successful career in pharmaceutical sales before going on full disability.  Ms. Macaluso is not letting this disease alter her lifestyle.  Dedicated to her friends and family, she lives life with zest.  Ms. Macaluso has been invaluable as a passionate fundraiser and advocate for the VCP disease community. 

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BRYAN VAN BRUNT

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.

MING GUO, MD, PhD

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

VIRGINIA KIMONIS, MD

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

CHRIS WEIHL, MD, PhD

Professor of Neurology

  at Washington University School of Medicine in St. Louis