La Storia di Gabriella
Mio figlio si è ammalato quando aveva vent’anni non ancora compiuti, la diagnosi era neuropatia ottica ereditaria di Leber (LHON), una malattia mitocondriale che colpisce il nervo ottico.
Latest News
Italy leads way for legislation re mito DNA replacement
News from Mitocon: Italy leads the way in the European Union with a secondary legislation for testing mitochondrial DNA replacement techniques
“New start” for energy metabolism – hope for people with rare diseases
Hello World
Reprogramming of cells reveals therapeutic approaches
With the reprogramming of somatic cells, scientists hope to come a step closer to a therapy and even a cure for Leigh syndrome.
STRIDE drug trial cancelled
We are always hopeful new drugs will be found that can take us closer to effective treatments and ultimately a cure. IMP is incredibly disappointed to learn that Reneo Pharmaceuticals has terminated its Phase III Stride trial
IMP publishes ‘How to’ guides
Setting up a patient led organisation can be daunting. With so much to think about, from governance to marketing, it can feel overwhelming. We want to support our members and those thinking about setting up new mito patient organisations by sharing all that we’ve learnt.
Shelley’s Story
I had never heard of mitochondrial disease until 3 years ago. My journey started when my mother experienced a rapid decline in health, losing muscle in most parts of her body and struggling to breathe. Her, my older brother and I all experienced hearing loss at a young age
Maddie’s Story
Maddie’s journey began in 2011. Her mother, Sara, quit her job to stay at home to take care of their new baby. Sara could tell something wasn’t quite right with her daughter. Being with Maddie all day allowed Sara to track Maddie’s changes, but she couldn’t put her finger on what was wrong
Garry’s Story
Garry Kruger didn’t understand what was happening, but he does remember that his symptoms started in 1999. He was experiencing leg and foot pain, lower back pain and he noticed that his eyelids appeared to be drooping
Joe’s story
Joe was looking toward a bright future. While in high school, he remembers that life revolved around hanging out with friends and playing sports. Joe was at the top of his class in academics, was on his varsity soccer team and was the captain of his robotics team. It was in the robotics lab at school when Joe realized something just wasn’t right with his vision.
Stories
Marco’s verhaal
Ons jongste zoontje, Marco, heeft een motorische en mentale handicap ten gevolge van een stofwisselingsziekte. Toen ik dit verdict voor het eerst te horen kreeg dacht ik dat ik nooit nog zou kunnen lachen, nooit meer echt gelukkig kon zijn.