Home of Nathan & Allison Peck
263 Lakeshore Dr
Americus, GA 31719
We want to invite you and your family to Americus on April 4, 2020 for a time of celebration and a fundraiser for our patient advocacy organization, Cure VCP Disease. It will be an exciting event as we’ll have a low country boil, flavorful snoballs, music, a classic arcade tournament, jet skiing, paddle boarding and swimming in our lake, plenty of fun activities for the kids and most importantly time to catch up!
Our organization, Cure VCP Disease, has been able to better organize patients globally and bring more attention to my family’s rare disease. Your support and encouragement has been crucial in helping us drive the mission. Check out the letter below for what the organization has accomplished and has planned for 2020.
Schedule of Events
3:00 PM – Event starts
5:00 PM – Food is served
6:00 PM – Live music
Party till we drop!
A little more about Cure VCP Disease…
In February 2018, we started Cure VCP Disease with the hopes of helping researchers conduct a clinical trial. Little did we know what we were getting ourselves into and the journey that we were embarking upon! No clinical trial has occurred to date, but we have realized all of the work that must occur to enable finding a treatment and cure for VCP disease.
In 2019, we continued our efforts to build an influential patient advocacy organization:
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 in 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.
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.
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.
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.
Nathan 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.
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.
We met with several drug companies interested in VCP research who were highly encouraged that our patient advocacy organization exists to support research efforts.
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 these planned activities for 2020:
We are actively planning our next Cure VCP Disease Patient & Caregiver Conference to take place back in St. Louis April 17-19, 2020.
At that conference, we will film a video with patients, caregivers and researchers about VCP disease. We were awarded a $3,500 grant by Global Genes to produce a professional awareness and education video.
We are planning the first ever VCP Scientific Conference that will have taken place in North America, September 18-19 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.
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.
Creating grants to fund a VCP specific nutritional study and potential development of an animal model.
A VCP researcher put it this way, “Pre-clinical drug identification and repurposing of existing pharmaceuticals are beginning to outpace VCP disease clinical trial readiness.” In other words, we must identify the patients and understand in a quantifiable manner how the disease progresses. Our mission as a patient organization is to support these efforts through networking, marketing and most importantly fundraising.