Recently, Kate and I attended the United Mitochondrial Disease Foundation annual conference in Indianapolis, IN. We learned a lot, had a chance to have some one-on-one conversations with mito specialist doctors, and met some neat people who are dealing with many of the same issues as us.
One of the doctors we chatted with was Dr. Sumit Parikh. Originally, we were scheduled to visit with his colleague, Dr. Bruce Cohen, at the Cleveland Clinic, but not until October. Dr. Parikh, who we really liked, had an opening in August, so we are now going to see him instead. Hopefully Roxie will tolerate the plane ride better than our trip to Utah a couple years ago ... Dr. Nelson, her neurologist, gave us a prescription for a sedative which we hope will help her.
Doing some research today, I came across this great user-friendly handbook on mitochondrial disease for patients and their families. It is co-authored by Dr. Parikh and Dr. Cohen. Go to the Mitochondrial Medicine Society website, scroll to the bottom, and click on "Mitoland: A Handbook for Patients and Parents" to download the pdf file.
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