Our daughter, Nina Hall, was diagnosed with a terminal, life limiting disease in 2013. Throughout the course of the year our “diagnostic journey” took us down many twists and turns, some more hopeful than others, but we were heartbroken to learn that Nina has a rare disease called Leigh’s Disease.
There are currently no FDA approved drugs for Leigh’s, or any mitochondrial disease, let alone any cures. The majority of treatments are designed around minimizing symptoms as opposed to treating the disease itself. Through a lot of work and advocacy, we were able to get Nina into a Phase 2B clinical trial for a drug called EPI-743 that has shown promising signs of slowing disease progression and improving quality of life.
While we are thankful for the opportunity to be in the trial and for the progress being made to better treat mitochondrial disease, we desperately want to see further progress made toward additional treatments, and maybe even a cure, for Nina and the thousands of children and families affected by Leigh’s and other mitochondrial diseases, now and in the future.
Our vision is to leverage our love of endurance sports, outdoor pursuits, and our community to help raise funds for the organizations that are doing the most to help fund research around Leigh’s Disease. Our first fundraising event was a great success, raising >$37,000; shout outs to Matt Bain, Eric Boyle, Bobby Moelter, Michelle Conlon, and Kim Siragusa for their recent and current fundraising efforts!
Given this success, and with the help of subsequent fundraising events by Team Unstoppable Nina members, we are now pushing to raise >$100,000, which will allow us to direct funds directly to Leigh’s Disease specific research through a research fund in Nina’s honor via the United Mitochondrial Disease Foundation, a leading organization committed to promoting research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.
While we are ultimately looking to raise funds, we are also hoping to generate energy and momentum for many races and events to come. We welcome anyone willing to join our team!