Tom had his first two significant strokes with in a month of each other in early 2015. The doctors were at a loss to explain why a seemingly healthy person with none of the usual stroke indicators would suffer two strokes in quick succession. Tom's MRI revealed that CADASIL had been silently causing irreputable damage to his brain over the years. He had numerous infarcts, especially deep in the white matter. Tom's team of doctors quickly grew in number as they searched for a cause of the infarcts. Tom's cardiologist told him, "You have had the million dollar work up, and we are no closer to figuring out what is happening to you. I am sorry."

In 2016, Tom was directed to a Harvard forensic neuropsychiatrist, who was teaching at Duke University (we lived in Cary, NC at the time). The doctor listened as Tom recounted his recent medical history. The doctor said, "I believe you have an inherited disease called CADASIL. I will order genetic testing to confirm." Within a month Tom had a confirmed diagnosis. Tom was told '"There is nothing we can do for you, try to live your life as best you can."

Tom, our kids, nor myself were willing to accept this prognosis and go quietly. Our CADASIL education began in earnest. We knew we had to have an thorough knowledge of CADASIL for Tom to receive the best possible care moving forward.

Since Tom's diagnosis, we have been welcomed into the world wide CADASIL family. People's willingness to share their knowledge and offer unconditional support has been a life line to us as a family.

Tom was accepted into the first round of the NIH CADASIL Discovery Protocol from 2017 - 2019. We are forever grateful for Tom's opportunity to participate in this extraordinary program helping researchers understand how CADASIL progresses throughout the body.

Over the past year, the effects of CADASIL have brought on a rapid decline in Tom's health. Despite it all, you will never see Tom without a smile on his face, quick to inquire how you are, never wanting anyone to worry about him.

In honor of Tom, his family will proudly join cureCADASIL's - Team CADASIL - to participate in UPenn's Million Dollar Bike Ride for Orphan Disease Research.

Thank you for your support!