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2021 Top-Rated Nonprofit

Cure Vcp Disease Inc

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Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases

Mission: 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.

Results: See 2020 Annual Report at: https://heyzine.com/flip-book/503301dbd9.html#page/1

Community Stories

12 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 5

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.

Karen Sweetman T.

Donor

Rating: 5

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.

1

Volunteer

Rating: 5

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!

1 Lindsey Virginia C.

General Member of the Public

Rating: 5

I found out about CureVCP through a genetic counselor in 2019. My mother, grandmother, and uncle all died from complications of this disease, so I was getting tested for the mutation. Luckily my test was negative! But I still stay connected with the VCP community for moral support and because my brother tested positive for the mutation. I have faith that this organization will help promote this disease so we can have more research and possible a treatment or even a cure in the future! I love this community!

1

Volunteer

Rating: 5

I was diagnosed in 2018, and fortunate that my genetic counselor was familiar with CureVCP.org. I was able to connect with Nathan and Allison soon after and have learned so much from them and the other members. Together, the VCP patients and researchers are finding others, often misdiagnosed, and improving the knowledge base o& this disease’s progression. I am proud to know this team of professionals and advocates, and look forward to participating in the journey to a cure for how ever long it takes!

1 Eduardo P.

General Member of the Public

Rating: 5

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.

2

Client Served

Rating: 5

I used to be a cyclist but I noticed for the last 10 years my legs were getting weaker. Now walking 100 feet can be difficult and climbing stairs almost impossible. I was diagnosed with VCP disease in December of 2018. While I was down in the dumps contemplating the impacts this terrible disease would cause, my wife was diligently doing her research on this very rare genetic disorder. She stumbled upon CureVCP.org and it has been a life changer/saver. Nathan and Alison have done an immense amount of work for the VCP community in a very short amount of time. The Cure VCP Disease Inc. non-profit has quickly brought patients and Doctors together. The result of this hard work has been a tremendously successful patient conference in 2019 and a scientific conference in 2021. A standard of care is in development and I hope it will be released soon. We now have multiple clinical studies going that will hopefully result in a clinical trial. Doctors from all over the world are now collaborating to learn all they can about this ultra-rare disease. Their biggest achievement to date has been bringing the VCP community together from all around the world and offering us a much needed glimmer of hope.

I am so thankful to Cure VCP Disease Inc and its founders for all they do. I look forward to all of the wonderful things that will continue to come from the hard work that this non-profit does and hopefully it will the to a successful treatment and a cure!

1 Jan Schiferl R.

Client Served

Rating: 5

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.

2

Donor

Rating: 5

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.

2

Client Served

Rating: 5

CureVCP Disease is a fabulous organization! I am a patient and they have been an amazing support. I am impressed with the highly professional energies they put into education, networking, research, facilitating collaboration of researchers and doctors in a race for a treatment/cure for this terrible disease, and support for the patients. Thank you!!!
-Cammie Knudsen
Client served & Donor

3 Katie C.10

Client Served

Rating: 5

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!

Comments ( 1 )

profile

Cure VCP Disease 10/04/2021

Katie, thank you for your kind words!

3

Board Member

Rating: 5

I have had amazing experiences with Cure VCP Disease. The members of this group are helpful, positive, knowledgable, and hopeful! The drive and desire to find a treatment or cure for VCP Disease is evident in all of the work that this group is doing.