Summer Update

It’s hard to believe Katherine turns four in just a few days (July 9th) and starts Pre-K on August 12th.  We are very excited about her attending Dave’s alma mater, Model Laboratory in Richmond.

We attended the United Mitochondrial Disease Foundation’s (UMDF) Mitochondrial Medicine Symposium 2015 in June and learned a great deal about the latest research. We spent time with family and friends living in the area and look forward to going back to DC soon.

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Katherine has been accepted for the National Institutes of Health (NIH) EPI 743 clinical study for mitochondrial diseases, which she will begin on August 3 in Bethesda, Maryland. The study lasts a year – 6 months she will receive a placebo and 6 months EPI 743. We will travel there multiple times over the next year for testing and monitoring. She will continue to take her “mitochondrial cocktail,” which is a compounded liquid consisting of CoQ10, L Carnitine, Lipoic acid, Thiamine, and Riboflavin. She started taking this cocktail in February 2015 and we have seen improvement with her muscle tone and shakiness. In fact, she is now able to stand independently for several seconds at a time. (Our insurance denied coverage of this $250/month cocktail, but Dave appealed and won. We learned insurance covers only 10% of these prescriptions.)

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In the meantime, we are enjoying the last days of summer before school starts in the fall.  Katherine has enjoyed fun days with cousins and friends, ice cream, the beach and pool, late nights, sleepovers with grandparents, family reunions, and everything else that fills childhood summer memories.

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We wish you a very happy 4th!

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