Saturday, September 21, 2013

TIME FOR AWARENESS

We’re ending Mitochondrial Awareness Week with our 3rd annual Mito Awareness Day. Families from all parts of Colorado as well as out of State gathered at the Anchor Center for Blind Children. We had a beautiful fall Colorado day, so we could also utilize the beautiful garden of the Anchor Center. Many parents and kids came out in their Mito shirts and gladly decorated their arms with Mito tattoos. One of our Mito kids brought his new bike, and let the other kids try it out.



We put our kids to work today. We were creating a thank you video to all of our Courage Classic donors. The kids had fun coloring and making their signs for the video.  The gym and garden of the Anchor Center is a perfect place to run around. The kids explored the gym equipment, biked and ran around in the garden.





Dr. Abbie Collins talked about the Mitochondrial Diagnostic Process. She covered all the different steps in the process of finding a Mitochondrial diagnosis, and how very difficult it is to diagnose mitochondrial disease. She covered criteria for possible, probable, and definite diagnosis of a mitochondrial disease. She took time to answer questions from families wondering what would be future diagnostic tools, and what could be possible next steps for specific families. It left us parents with a deeper understanding of why it can be so very hard to get a definite diagnosis. Dr. Abbie Collins also talked about all the projects going on in the Mitochondrial Clinic at this time. Families got very excited about the upcoming Educational Symposium we are going to organize at Children’s Hospital together with the Mitochondrial Clinic. Stay tuned for more details!
 


Dr. Van Hove talked about newly diagnosed Mitochondrial Diseases in his lab, and the research papers he is ready to publish. He talked about how he selects the patients he decides to do full exome/genome sequencing on, and what criteria go into his thought process. He made us happy by letting us know that in each and every research paper he publishes, he thanks Miracles for Mito for our generous support. We are excited to get the word out about our non-profit.
It was a beautiful fall day in Colorado, the kids had a blast, and they never want to leave.  Parents hugged, and exchanged information on how their kids are doing.  In the middle of Mito, people once again found strength and hope in each other.






We are looking forward to seeing everyone early spring again. To a healthy winter for our Mito kiddos!

Love, Maria.

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