Message from Our Guild President

Uncertainty, fear of illness, a “new normal,” anxiety about economic impact. You may think I am talking about COVID-19. But these words describe the daily life of families with children who have mitochondrial disorders.   With COVID, billions of dollars are being pumped into the economy and hundreds are racing to find a cure, a treatment, and a vaccine. We can reasonably hope the COVID pandemic will end within 18 months, and that the medical community will succeed in offering a vaccine. Mito families know that a Mito cure will not be that quick.

Because mitochondrial disease is on the pioneering edge of medicine, funding is hard to get. Diagnosing Mito is not quick nor easy. Good medical care is hard to find; treatments and cures will likely take decades. Meanwhile, Mito kids are struggling, and up to 50% of those with Mito disorders will die before their teenage years. Therefore, the Mitochondrial Research Guild of Seattle Children’s Hospital is asking you, in this unusual year of social distancing, to again help Mito families “go the distance” in the fight against Mitochondrial disease.

You are our friends, our family, our colleagues, and our neighbors. Thank you so much for your past support! Because of you, timing and treatment options for Mito kids are improving at Seattle Children’s. Please consider giving again.

Here is an update of our activities and opportunities to give:

  1.  DONATE ANYTIME to the Mitochondrial Research Guild at
  2.  SAVE THE DATE and join us at our 18th annual fundraiser event – The Mito Cocktail Party at Willows Lodge in Woodinville, Washington on October 17, 2020. We are hoping for a live event but will let you know if we go virtual.
  3. SPONSOR OUR FUNDRAISER. Do you own a company? Do you work for a company that might sponsor? Here is a link to our Sponsor page.

We want you to know that we understand feelings you personally may be experiencing because of COVID-19. We also know that new realities can be adapted to and that fear does not define us. We know that over time fear, anxiety, and anger can be replaced with calm assurance, happiness, and peace…even with new realities. Just ask a Mito parent.


Diane Nielsen