March 29, 2020

Solving a rare disease puzzle is hard. There are now nearly 8,000 rare diseases, and many of those have patient numbers in the single or double digits worldwide. Most doctors have never even heard of these conditions, and the gene mutations responsible for their underl...

June 12, 2019

We received Carson and Chase’s diagnosis of MEPAN Syndrome at Stanford a little over a year ago as a result of our acceptance into the Undiagnosed Diseases Network program. We’ve been in contact with the UDN teams at Stanford and Harvard since then, and they have offer...

April 19, 2019

A few weeks ago I had the opportunity to participate at an event hosted by the United Mitochondrial Disease Foundation. It was a "Patient-Focused Drug Development Meeting", which is a complicated way of saying it's a forum where rare disease patients and families...

November 29, 2018

I've lost track of how many times people have told me or my wife Nikki "you're doing an amazing job with Carson and Chase" or something similar. At a surface level I certainly appreciate the words of support and encouragement, but seldom do I stop to internalize those...

October 11, 2018

How the UDN found a diagnosis for Carson and Chase

September 17, 2018

The journey to find a cure for MEPAN Syndrome

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Our Recent Posts

More Awareness for MEPAN in Genetic Testing Labs

March 29, 2020

Sharing Our Story With The UDN Team

June 12, 2019

Sharing Our Story With the FDA

April 19, 2019

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