UMDF’s Mitochondrial Medical Symposium has become the place where news breaks on the latest potential treatments and clinical trials. In 2019, Minovia Therapeutics, an Israeli company running the first ever cell therapy trial to treat a mitochondrial disease.
Every Wednesday night, you will find eight year old Harper Johnson in her seat at the Davis Arena in Louisville, KY. While she loves dance and will appear this year in ‘The Nutcracker,’ it’s not the ballet she is coming to see.
Lora Lacey was in her senior year of high school when she suffered a viral infection that affected her muscles. At the time, her mitochondrial disease was barely noticeable and she would not get an official diagnosis of mitochondrial myopathy until she was 19.
An online search for Kearns-Sayre Syndrome (KSS) led Rachel Godshall to attend the UMDF’s annual Symposium.
Project donors helped our community make history after the Big Pitch event at Mitochondrial Medicine 2019.
While mountain trail running is not new to the couple, they are putting their mitochondria to the test in honor of their daughter, the “Unstoppable Nina”, whose mitochondria are not functioning normally.
The family received help all along their journey from family and friends, the medical community, their schools and colleges, and from the UMDF when both of their sons were diagnosed with mitochondrial disease.
From the very beginning, there has been one constant corporate sponsor at UMDF’s Energy for Life Walk in Minnesota.
Hayley is one of many patients who volunteer their time to provide support, education and resources to other patients and families. It’s a role that gives her the energy to escape her illness and help others like her.
After gathering information and knowing that her family was not alone on their journey, Melissa decided to volunteer with UMDF to ensure that patient families like her know they are not alone.