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Help Us Find A Cure!

VCP Disease is a rare genetic disease that currently has no treatment or cure. Our dedicated team is working with leading researchers to find a cure!

$26,600 raised

$50,000 goal

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We need your continued support to advance towards a cure

In February of 2018 we started Cure VCP Disease with the hopes of helping researchers conduct a clinical trial. Little did we know the journey that we were embarking upon! No clinical trial has occurred to date, but we now understand all of the work that must occur to enable finding a treatment and cure for VCP disease. As you will see below, we have accomplished much in a short amount of time, and we have big plans for 2020 and beyond. Thank you for your support in enabling our progress.

Just some of our accomplishments in 2019

  1. We participated in Rare Disease Week on Capitol Hill and submitted an appropriations request for funding of a VCP natural history study. We were successful including it in the House of Representative's Health and Human Services (HHS) bill and we continue to encourage the Senate to include funding in their HHS bill.
  2. In April 2019, we conducted our first ever Cure VCP Disease Patient & Caregiver Conference in St. Louis, Missouri. We had over 60 patients, caregivers and researchers in attendance.
  3. We doubled the number of participants in our Cure VCP Disease Patient Registry. We still do not understand the global prevalence of the disease and we must keep registering patients as this is a requirement for encouraging more drug companies to take an interest in VCP disease.
  4. We were successful in getting the Muscular Dystrophy Association and Muscular Dystrophy UK to list VCP disease on their lists of neuromuscular diseases. This is critical for driving credibility and knowledge of VCP disease within the neuromuscular disease community.
  5. We were selected as a finalist for the Chan Zuckerberg Rare as One Initiative. This generous grant had more than 300 patient advocacy organizations apply and we made the cut down to the last 30. This was a collaborative effort with the research community to articulate a strategy for creating a global research network. We are hopeful to be selected and are still awaiting final announcement on the selection of 10 organizations.
  6. Our CEO was selected to participate on the Global Genes Foundation Alliance Leadership Council. This was a great opportunity to learn from more established patient advocacy organizations and increase the exposure of Cure VCP Disease.
  7. We exhibited at the MDA Scientific and Clinical Conference and American Academy of Neurology Conference, which was a productive time to meet with doctors and scientists about the efforts to cure VCP disease.
  8. We are building relationships with several drug companies interested in VCP research who were highly encouraged that our patient advocacy organization exists to support research efforts.

Our big plans for the future

Finding a cure won't just magically happen and Cure VCP Disease's involvement will be key to driving a breakthrough. We are excited about our leadership of just some of the planned activities for 2020:

  1. We are actively planning our next Cure VCP Disease Patient & Caregiver Conference to take place back in St. Louis April 17-19, 2020.
  2. At that conference, we will film a video with patients, caregivers and researchers about VCP disease. We have identified a videographer and were recently awarded a grant from Global Genes to offset some of these expenses. This video will be shared on our website, social media and other channels.
  3. We are planning the first ever VCP Scientific Conference that will have taken place in North America, September 25-26 at Caltech in Pasadena, California. This will be an opportunity to bring together both non-clinical and clinical scientists together to discuss research and actions to understand VCP.
  4. Providing funding to researchers attending VCP relevant conferences. It is our way of showing our support for their efforts. Continuing to participate in neuromuscular conferences and reach out to the global research community to identify patients.
  5. Creating grants to fund a VCP specific nutritional study and potential development of an animal model.

Join us in the effort to finding a cure and a treatment for this rare genetic disease. Your kind donations support our efforts to drive awareness about our rare disease and to facilitate partnerships with leading researchers and doctors.

Cure VCP Disease, Inc. is an IRS registered 501c (3) organization. | www.curevcp.org