This coming week, September 16 – 22, 2024, marks World Mitochondrial Disease Week.
For me, the week is deeply personal. This year marks twenty years since my infant daughter Natalie was diagnosed with mitochondrial disease. Her battle lasted only a year, but her impact continues to this day. She’s my “why.” She brought me to the United Mitochondrial Disease Foundation – first as a volunteer, then board member, now as Science & Alliance Officer and Interim Managing Director – and drives my passion for finding a treatment, and eventually a cure, for this disease.
If you’re reading this, you probably have a “why” as well — a family member, a friend, a neighbor, a coworker. It could even be your own battle.
To you, I say thank you. Thank you for all that you’ve done and all that you will do. And yes, it’s true, there is much more work to do. But if ever there was an appropriate time to reflect on all we’ve accomplished together, it’s this week.
When Natalie was diagnosed there was little doctors could do. There was almost no understanding of mitochondrial disease. There were no active trials.
Today, researchers are exploring mitochondrial dysfunction’s role in not only mitochondrial disease, but everything from Alzheimer’s to diabetes — even aging itself! Last year a drug for Friedreich’s Ataxia was approved by the FDA, making it the first disease associated with mitochondrial dysfunction with a treatment. There are nearly a dozen potential treatments in the mitochondrial disease therapeutic pipeline, several of which will come up for potential FDA approval in the next year.
Help is on the way. And we at UMDF will continue to do everything in our power to make sure that comes as soon as possible.
We are only here with your help, be it with your voice, generosity, time, or energy. You’ve made donations, driven awareness, talked with legislators, or maybe even joined our patient registry or enrolled in a clinical trial.
So please, when you take a moment to think of your “why” this week, stand tall knowing you’ve helped get us here. Then fight on.
Sincerely,
Dr. Philip Yeske
UMDF Interim Managing Director and Science & Alliance Officer
PS. Visit our World Mitochondrial Disease Weekblog page to see how you can help raise awareness during the week, including tons of mito facts, events, social media content, and more.