Sunday, June 16, 2013


Jacob was sick last week with pneumonia and pseudomonas. He needed to stay in the hospital for a couple of days to get over the acute part of his pneumonia and to get the right antibiotics on board. We got him home just in time for me to jump on a plane to Newport Beach. In Newport Beach, mitochondrial doctors, patients and families from all over the world met to talk mitochondria for two days.

I had not been at UMDF's (United Mitochondrial Disease Foundation) conference for five years. With surprise and excitement, I realized a lot has happened in the field of Mitochondrial Disease in the last couple of years. Five years ago, the big topic was how much CoenzymeQ10 you should give your Mitochondrial patient. Today, we are talking treatments for Mitochondrial Disease.
T-R-E-A-T-M-E-N-T-S. I have told others and myself for seven years, there is no cure for Mitochondrial Disease. That is still the case, but there are treatments that are actually working to improve the lives of Mito patients. Epi-743 is an antioxidant. It is today in clinical trial, and it is the most effective treatment to stop or slow down progression of this horrible disease. Jacob is a very lucky boy to have qualified to receive this drug under the emergency protocol when he was very sick in the PICU last fall.

I had the honor to sit next to one of the top Mito researchers during the dinner. He felt hope for the first time. The unfairness of Mitochondrial Disease is what drives him in his work. He is committed to his research until there is a cure. He even gave me hope on what we could do for Jacob's specific mitochondrial disease. I am on a mission to get researchers to collaborate to get quicker results. I feel stubborn, and very determined. I am on a mission.

It was a fantastic conference for Miracles for Mito. We were a great group of Miracles for Mito members attending the conference together. UMDF got a true interest in us and what we do, and we're definitely on our way to collaboration for the first time! The investment made in the Mitochondrial Clinic from the Summits for Samantha Courage Classic team was well noted at the conference. From the oxygraph machine now sitting in the Mitochondrial Lab here in Denver to the NAMDC database soon to be populated with all patients seen in the Colorado Mito Clinic. The database will lead to opportunities for Colorado patients to participate in trials and other research across the country. We have come a long way with what we do in our spare hours to support families and research, and the conference gave us all new energy for the work we do, and how much more we can do!

It is a unique conference in the way families and doctors interact together. It was a strong force of energy, knowledge, expertise, collaboration, and hugs shared throughout the two days.

And then there was the beach!


P.S. If you want to donate to this year's Courage Classic ride, you can do it here! We're only a month away from the ride:

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