The NDR Fund has been created by the loved ones of Nini Del Rosario (NDR). Though Nini’s symptoms started in 2011, she went undiagnosed and mis-diagnosed for almost 5 years. Dystonia is not well understood or known to many and there are statistics indicating the average Dystonia patient goes years without being properly diagnosed. This is why we are dedicated to raising awareness about the disease. Her symptoms started with pain in the left shoulder, then in her little finger on her left hand. Many other symptoms manifested slowly over time.
At first, it seemed to progress slowly but then spread much quicker. It went from a little finger to the whole hand to her whole left side and then in 2014 it jumped to the right side of her body. By the time we found the right doctors to identify it properly as Dystonia and treat her with the most advanced protocols, she was being affected everywhere. We tried everything currently known, including DBS (Deep Brain Stimulation) but, unfortunately, she was not one of the lucky patients for which the latest known treatments could slow down or stop the disease.
Nini passed away December 8th, 2017. Dystonia is a disease with no cure and it does not stop. It will keep attacking current and new patients until we find the cure. It is for that reason, in loving memory of Nini and how hard she fought, that we will not stop fighting for the cure. We need to raise funds and accelerate research to find the cure sooner. We support non-profit organizations dedicated to raising awareness, patient and family advocacy and fundraising for new research to find the cure. For 2019, all of our fundraising will go straight to the Dystonia Medical Research Foundation. We thank you and appreciate any contribution you and your network can make.