The Fairfax Strides event is in memory of, and support for all those who have been impacted by CJD.
Paul Nugent and Grace Highman’s son Daniel had just turned 18 in the fall of 2012 when he first mentioned blurry vision. Six months later, he could barely walk. His body was failing him and doctors didn’t know why.
Over the next six and a half years, in a search for diagnosis and cure, Daniel would have more than 700 blood tests, 12 MRI’s, 4 PET scans, 10 CT scans, 5 Spinal taps, 6 ultrasounds, 2 EMG’s, 5 EEG’s, 3 EKG’s, 2 echocardiograms, 2 Skin biopsies, a muscle biopsy and full genetic testing. He was seen by top neurologists at Johns Hopkins, Boston Mass, Columbia Presbyterian, Mayo Clinic and NIH Undiagnosed Diseases.
Every day, a little more of Daniel slipped away. He would eventually lose the ability to talk and he became completely immobile. Daniel died on Valentine’s Day 2019 at the age of 24.
Paul and Grace didn’t find out Daniel had Creutzfeldt-Jakob Disease (CJD) until after his death. CJD is a rare neurodegenerative disease that has no treatment or cure. The incidence of CJD is approximately one and a half to two people per million per population per year. In the United States this translates to approximately 550- 600 new cases per year.
“We always knew Daniel was one in a million. As it turns out, he was more like one in a billion. To be under 30 and die from CJD is that rare,” said Paul. The time he lived with CJD is one of the longest on record…most people only live a few months.
Paul and Grace started the Fairfax Strides for CJD event in 2020. Strides for CJD is an annual walk/run that families host in different cities across the country the first two weekends of October. All money raised benefits the CJD Foundation, a 501(c)(3) organization, to provide family support, medical education, and research programs.
They co-host the event with Clarence Hunter, another parent whose daughter Diana passed away of CJD far too young. They met Clarence a few months after Daniel’s passing at the 2019 CJD Family Conference.
“It’s very rare to find anyone who has been through the unique trauma of losing someone to CJD….much less a child,” said Grace. “We knew there had to be a reason for going through all of this and that there is a cure out there.”
“Our goal is to raise money and awareness to support research and programs but also to support one another,” said Grace.
Several families come to the event, to remember Daniel and Diana and other loved ones lost to CJD and also to fundraise for a cure so that no other parent has to go through what they did.