Cure VCP Disease
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:
to provide global education and awareness of VCP diseases to doctors, researchers, industry, patients, caregivers and the general public;
to develop and maintain a global patient registry of VCP disease patients;
to develop and maintain a fundraising vehicle to support awareness and education efforts;
to collaborate with other global organizations and entities which are promoting a cure for diseases which have symptoms similar to VCP diseases;
to sponsor, host and/or participate in events and activities that promote efforts to cure VCP diseases.
Board of Directors
Our Board of Directors are all part of the VCP Disease community and are highly motivated to do whatever it takes to find a cure. Many of us are fighting the disease everyday. This gives every aspect of what we do more purpose and meaning as it directly affects as well as inspires us!
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.
Jeannie Macaluso of Florida is the Secretary of Cure VCP Disease, Inc. Three 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.
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.
Global Committee Chair
Eduardo Pinheiro of Brazil has a degree in Economics from Mackenzie University and worked for 21 years in a payment solutions company (joint venture Fidelity USA / Bradesco Bank) as a Controller. He is currently on disability, dedicating himself to finding a cure for VCP Disease, which has plagued his family, and a personal physical rehabilitation program. In addition to his financial experience, Eduardo brings a global perspective to the board.
BRYAN VAN BRUNT
Bryan Van Brunt of Florida is the Deputy General Counsel for General Dynamics Ordnance and Tactical Systems (a multi-billion dollar Division of General Dynamics). He leads and supervises attorney, paralegal and export compliance staff in the U.S and Canada. Bryan personally specializes in U.S. and international defense contracting, dispute resolution with government and commercial entities, contract negotiations, strategic teaming arrangements and joint ventures, litigation management, intellectual property, and compliance. 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.
Renee Goff of Michigan is a patient with several family members affected by VCP Disease. Until recently, she led a career in the insurance industry. She has been one of the most dedicated volunteers for Cure VCP Disease leading the effort to create our T-shirts and car decal as well as hosting our first fundraising event, a bowling tournament. Renee has also been instrumental in helping to organize the Patient Conference.
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.
Medical Advisory Board
Our organization is advised by some of the best clinical and scientific researchers who are working tirelessly to understand the VCP gene mutation.