My Nonprofit Reviews

TheTodd - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

TheTodd

5 profile views
1 reviews

Review for Cure Vcp Disease Inc, Americus, GA, USA

Rating: 5 stars  

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!

Role:  Client Served