Some scientists never have the opportunity to meet a single patient in the community of the disease they work their entire lives trying to understand. This can make them feel…
When Lucinka was born, it seemed like everything was all right. But it wasn’t. Lucinka wasn’t doing well, and a whirlwind of examinations began. First, a diagnosis couldn’t be made.…
According to a story from Wales Online, Samantha Josey's childhood was characterized by unpleasant symptoms and health problems, resulting in hospital visits and bouts of serious illness. Her symptoms included…
According to a story from clinicaltrials.gov, the Children's Hospital of Philadelphia is sponsoring a study that has the potential to make mitochondrial disease research and drug development much easier. The…
This year Mitochondrial Disease Awareness week is September 15-21 but I and other members of my family will continue to fight this battle for the rest of our lives. For…
According to a publication from Business Wire, the Israeli biotechnology company Minovia Therapeutics recently finished dosing the first participant in a phase I/II clinical study of the Company's experimental mitochondrial…
According to a story from Wellcome Center Mitochondrial Research, a multi-center collaborative study that involved researchers from different sites around the UK has resulted in an improved understanding of the…
PREFER PREFER stands for Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle. It is a multi-stage project developed by Newcastle University's Welcome Centre for Mitochondrial Research in effort…
According to a story from Yahoo, the family of Wyatt Beiermann, a seven year old boy with lethal mitochondrial disease, is doing their best to savor the limited time that…
According to an article from Stat News, patients, doctors, and advocates around the country are starting to push more energetically for a repeal of a U.S. law that effectively bans…
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A birth involving mitochondrial replacement therapy took place as part of a clinical trial in Greece according to a recent article in STAT. Greece is now the second country…
According to a story from news-medical.net, a recent study has reshaped the scientific understanding of the origins of mitochondrial disease. For decades any mutation that affected the mitochondrial DNA and…
Ontario, Canada is in the process of working to revamp their healthcare system. One of their primary goals is to increase the role that patients and their families/caregivers play in…
A publication at Science Daily recently announced that findings from Children's Hospital of Philadelphia suggested that cysteamine bitartrate, already used for nephropathic cystinosis (a rare kidney disease), might potentially benefit patients…
According to a story from BioSpace, the biopharmaceutical company Modis Therapeutics recently announced that the US Food and Drug Administration (FDA) has granted Breakthough Therapy designation for the company's experimental…
According to a story from Cornwall Live, parents Ben Keverne and Hannah Chapman were recently devastated by the loss of their daughter Maisie. The little girl was diagnosed with mitochondrial…
There are only 11 people in the world diagnosed with Mitochondrial Complex 1 Deficiency. Katherine Faughn, a 7-year-old living in Kentucky is one of these 11. The disease wasn't even…
According to a story from Medical Xpress, a team of scientists affiliated with the University of Granada have developed a new potential treatment for a form of mitochondrial disease that…
According to a story from MedicalXpress, it was around 30 years ago when two sons of Marsha and Allen Barnett, named Chuckie and Michael, both passed away from Leigh syndrome.…
According to a story from NRI Pulse, Kiran and Anju have been forced to watch over the past year as their daughter Aadya's physical and mental condition declined. After serious…
A clinical trial application for a Phase 1 study of the investigational drug KL1333 in healthy volunteers and patients with genetic mitochondrial diseases has been approved by a regulatory agency…
According to a story from MedicalXpress, a group of international scientists spearheaded by researchers at the University of Colorado have managed to identify certain genetic mutations that are connected to…
According to a story from UPI, gene editing technology could be a potential treatment for mitochondrial diseases, a rare, genetic illness that is usually fatal. In a proof-of-concept experiment, researchers…
A research team led by scientists from Newcastle University believe that they may have identified a previously unknown genetic cause of childhood mitochondrial disease. For more information about this, you…
Linda Ramsey had a son named Kevin. In the beginning everything was okay, and Kevin grew normally for a short time. After a few months, his experienced difficulty swallowing. He…
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