Sunday, November 13, 2011

WHAT WE CAN DO

This summer, Miracles for Mito, gave donations to the Mitochondrial Clinic and the Special Care Clinic at Children’s Hospital Colorado. We wanted to give back to two of the clinics who are supporting our Mitochondrial children and adults in terms of primary care, treatments, and Mitochondrial research.

By now both clinics have allocated the funds we gave them.

The Special Care Clinic is starting a program called Reach Out and Read. It will allow Special Care Clinic to give out free books to all children coming in for their well-child checks up to the age of 5 years. The books are both in English and Spanish, and they also have a special set of books particularly chosen for children with disabilities. As the clinic enrolls in the program, books will be sustained indefinitely through the future. Reading is one thing that we all can do for our children, but not all families have the funds for books. For many of us raising a Mitochondrial kid, this is one of the things we can do together. Jacob always lights up when we cuddle together and read a few books together.

The Mitochondrial Clinic will pursue a biomarker founded in Finland. Today, the most common test for suspicion of Mitochondrial Disease is to measure the lactate acid level in the blood. If that is high in the blood, it could be an indicator of Mitochondrial Disease. The lactate acid level has proven to only be right as a testing tool in 60% of the cases. This patented biomarker from Finland is a more sensitive test, and is right 95% of the times. It will more than anything help to identify who should have a muscle biopsy to further understand if the patient is a carrier of Mitochondrial Disease. As a first step, Dr. Van Hove, the head of the Mitochondrial Clinic, would like to test this biomarker further by using the Mitochondrial Disease Biobank at the Mayo Clinic. We’re hoping this biomarker will be available to patients in the Mitochondrial Clinic in the future.

Having been part of Miracles for Mito for a year now, and starting to see the fruits of our work, it is worth the hard work. It gives meaning to fight this disease with no cure. With baby steps we can make things a little bit better for a family being faced with this diagnosis. We can make a difference. We can create little Mito miracles.

But none of this would be possible without all of our supporters, volunteers, and donors out there. You made this happen.

Sincerely thanks,

Maria.

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