Cure Vcp Disease Inc

A fantastic nonprofit organised who have a holistic approach covering everything from patient care, online support meeting and a patient registry to drug discovery and collaborating with researchers.

Such a great organization! The people involved are caring and compassionate and work so hard every day to reach a cure!

Amazing program started by patients for patients. A place to partner with doctors to do research and share new information.

My husband was diagnosed with IBMPDB as a result of VCP genetic mutation. This diagnosis came after a very long and stressful diagnostic process. When I was feeling the most lost, Cure VCP and it’s community comforted, informed and supported me and my husband. We are so grateful for the incredible work this organization is doing and we feel we are part of something positive and can make a difference. We know that as long as this organization exists and is supported, we have a chance to continue efforts and one day Cure VCP Disease!

I was diagnosed with Inclusion Body Myopathy in 2016. This issue is caused by the VCP gene that is a hereditary issue in my family. The Cure VCP group is an incredible team advocating for patients with the VCP gene defect. They have created a caring community that helps patients to understand their disease. The Cure VCP has helped with studies to help the medical community understand the disease and the issues faced by patients with the disease. I am happy to be a part of this group.

As a VCP patient this organization helps me connect with resources and other people to feel less alone with a rare disorder.

Cure VCP Disease patient advocacy is amazing. They provide hope and support to patients of VCP Disease. Allowing people to come together to find a cure and do the legwork necessary for even being eligible for a drug trail. Cure VCP Disease has launch a Natural History study and has created a standard of card for VCP Disease just to name a few of the accomplishments of the is organization in a short period of time.

I was not familiar with the rare disease, VCP and connected with Nathan Peck on LinkedIn. Nathan Peck is the founder of CURE VCP Disease, Inc. and inherited the disease.
VCP is a rare disease that can affect a patient's muscles, brain, and bones. Nathan inherited this disease. He is passionate to find a cure and help others who have the disease improve their quality of life. Nathan's story is heartfelt and extraordinary, and has carried over to the creation of the CURE VCP Disease, Inc. organization.
Nathan is a brilliant mind and has put together a dedicated team of volunteers, family members, partners, and professionals who are equally committed.
The organization is working with over 50 doctors, clinicians, researchers, and scientific professionals to collaborate, share resources, raise funds, advocate for patients and their families to find a cure.
I was intrigued to learn more and explored their website. It's filled with informative resources to help all those impacted by the disease.
The Peck's authentic efforts make you want to get involved. I encourage others to learn about the disease and help the organization by spreading the word, posting their information on social media, make a financial donation or contribute services to help the organization in its mission to find a cure.

I found out I am a carrier in 2008 after having a post mortem testing of my mothers brain tissue. I was in a yearly research testing program with a local university for about 9 years. I was told I could not participate anymore since my contact person was not available on their time. So I heard about VCP org. and started following. I have learned more from them than I did in my research years. No results were given from my years of testing. No information was shared with my PCP or specialist. I now have info cards that I share with my doctors , thanks to Cure VCP.org.
Please support this much needed patient care organization.

I first met Nathan in 2018, and I was moved by his dedication to advancing research and support for those diagnosed with VCP. Through Cure VCP Disease, Nathan, Allison, and many patients and families are joining together to work toward a better understanding and new treatments for this disease. Their efforts have accomplished so much for the community and the organization continues to work tirelessly to ensure that patients and families are supported and given the best care possible and also work toward potential new treatments. I joined as a Board Member in 2020, and I am honored to support the organization.

I am one of six siblings and one of two that don't have this awful, rare disease. Both of my sisters have already passed due to it and I have two brothers that are both wheel-chair confined. It is a very debilitating disease that takes away muscle control so a person loses their mobility. I'm so proud of my nephew who along with his wife, founded Cure VCP Disease, Inc. in the hopes of finding a cure.

I’ve been involved with Cure VCP Disease since its inception. Patient advocacy is so very important. It has given me hope for a potential treatment. We hosted a patient & caregiver conference prepandemic and have United patients through monthly zoom calls. We have educated many medical professionals about our rare disease. We are working with researchers who have written a Standard of Care paper to assist those medical professionals when following a patient. In less than four years, Cure VCP Disease has made tremendous strides!

Since it was created in 2018, Cure VCP DIsease, Inc. under the leadership of Nathan and Allyson, has done a great job of identifying patients, assisting, contacting pharmacists, researchers.
In these almost 4 years of existence, we made a lot of progress, we worked hard and, above all, we formed a big family, where we share our problems, our hopes and help each other.
I have been a member of this community since the beginning and I am proud to be with everyone in the fight against this terrible disease.

As a care partner for my husband, the Cure VCP Disease group has helped me to understand the implications of his Inclusion Body Myopathy disease. The group has been supportive and instructional for us while providing an awareness for our family and friends through the website and documented studies and research. I appreciate the informative webinars which help me to assist my husband physically and emotionally, and I enjoy the virtual happy hours which provide open and optimistic conversation. The outstanding coordination by the group of an ongoing natural history study is helping to benefit essential research. The professionalism and collaboration of and by the board and management team is exceptionable.

I was diagnosed in 2016 and knew very little. IN 2019 I connected with Nathan and attended the VCP conference. There I met a group of people who would turn out to be my support and encouragement. I also gained so much knowledge about VCP. Nathan and Allison and all the board members are so valuable in the rare community. I couldn't do it without them.

Everyone at Cure VCP is outstanding! They provide a positive outlook on a terrible disease. They provide a support system, take time to attend events and conferences to spread awareness, help coordinate information for trials. Without them, I would still be lost. Many of my family members had this disease but were misdiagnosed. I was the first in my family to get genetic testing. Nathan reached out to me to let me know I’m not alone in searching for a cure. The time and energy this organization devotes, is absolutely outstanding. I’m glad I have their eagerness and determination on my side!