In our imperfect world, too many people suffer and die from disease. We spend billions searching for cures for cancer, heart disease, and other widespread illnesses – and every so often there is a breakthrough. The biomedical research paradigm is stacked against those afflicted with rare genetic conditions like mitochondrial disease, especially so for children. For orphan diseases like mitochondrial disease, the patient numbers just don’t add up, so the dollars aren’t there to fund the science.
We reject this math. The chance at a healthy life is not a numbers game.
The Mito Fund
Without the significant infusion of capital made possible by venture philanthropy, the long-term landscape can feel bleak for those living with rare diseases, and for the people who love them. UMDF was initially founded to support patients and families through education and research grant-making, and more recently through facilitating access to clinical trials, building patient registries and other initiatives. We’ll never stop serving our patients in this way.
And now, the Mito Fund will add to our arsenal. Venture philanthropy will usher in not just a new level of investment in revolutionary science, but also a new level of hope for patients and their families. Investors in the Mito Fund fully understand this equation – their appetite for risk is matched only by their thoughtful and strategic commitment to make a positive difference in the lives of those affected by mitochondrial disease. We’re in this fight together.
Venture philanthropy is a relatively new model in disease-focused healthcare philanthropy that has resulted in new treatments for juvenile diabetes, cystic fibrosis, and other rare, debilitating illnesses. It is similar to venture capital – significant money is invested in for-profit companies that show promise – but with one critical difference. Venture philanthropists, and organizations like UMDF that house the funds, do not benefit financially from their investment.
There is no profit motive. Instead, any financial returns on successful investments are funneled directly back to the philanthropic fund to be re-invested in new ventures. More targeted shots on goal means a greater likelihood of success in the search for treatments and cures.
About the United Mitochondrial Disease Foundation
For more than 25 years, UMDF has built a network of the top clinicians, hospitals and researchers dedicated to fighting mitochondrial disease. We are driven by a nationwide community of 100+ ambassadors solely focused on supporting patients and families affected by mitochondrial disease. Together, we are committed and energized to make a difference by funding the best science no matter where it is found in the world and providing critical programs and services to the patient families we serve.
It’s estimated 1 in 5,000 individuals has a genetic mitochondrial disease. The exact number of individuals suffering from mitochondrial disease is hard to determine because so many who suffer from the disease are frequently misdiagnosed.
While this disease primarily affects children, adult onset is becoming more common. The aging process itself may result from deteriorating mitochondrial function. There is a broad spectrum of metabolic, inherited and acquired disorders in adults that can be attributed to abnormal mitochondrial function.
There are numerous types of mitochondrial disease, often with each type having multiple genetic variants, meaning prognosis can vary. In many cases, the disease is devastatingly progressive – meaning affected children may not survive beyond their teenage years. Adult onset can result in physical changes in a short amount of time.
There are currently no FDA-approved treatments or cures. Most patients take a “mito cocktail” of vitamins and dietary supplements in hopes of slowing the disease’s progression.
The State of Mitochondrial Science
The difficult truth is that today, despite scientific progress, there are still no FDA-approved therapeutics for patients suffering from mitochondrial disease. A new approach is required. A new level of investment is required. We must work with and support highly promising commercial ventures. Yes, we continue to maintain a steady, long-term vision. But we must act. Now. Our patients – and their families – deserve nothing less.