Strides for CJD Walk Planned At Burke Lake Park

BURKE, VA — Strides for CJD, a walk and run to raise awareness and funds to fight Creutzfeldt-Jakob Disease, is planned for Sunday, Oct. 10 at Burke Lake Park.

Creutzfeldt-Jakob Disease is a rare neurodegenerative disease with no treatment or cure and is invariably fatal. The disease is caused by proteins that can misfold in the brain, causing effects such as rapid mental and physical deterioration.

The Strides for CFD events are held annually to pay tribute to those affected by CJD and raise funds for the CJD Foundation, which focuses on family support, medical education and research programs.

In 2020, Oakton residents Paul Nugent and Grace Highman started the Strides for CJD Walk in Northern Virginia in memory of their son Daniel Nugent, an Oakton High School graduate. The event seeks to educate people about the disease and help find a cure. The family never knew Daniel had CJD during the six-and-a-half year battle until he died in 2019.

"We always knew Daniel was a one in a million kid,” said his parents Paul Nugent and Grace Highman in a statement. "As it turns out, he was more like one in a billion. To be under age 30 and die from Creutzfeldt-Jakob Disease is that rare."

In fall 2012, Daniel was 19 and was visiting home from James Madison University when he started experiencing blurry vision. By the end of the semester, that blurry vision worsened to double vision.

At the end of the following semester, his parents noticed a hitch in his walk and took him to a doctor. After an MRI and neurologist referral confirmed he did not have Multiple Sclerosis or a brain tumor, they were left without a diagnosis.

His walking continued to quickly worsen, and Daniel started becoming anxious and depressed and experienced lack of sleep. The neurologist believed the issue was a neurological problem but could not figure it out despite ordering blood tests, a spinal tap, an EMG, and more MRIs. Daniel even went to top neurology centers, underwent 700 blood tests, 12 MRIs, four PET scans, 10 CT scans, five Spinal Taps, six ultrasounds, two EMGs, five EEGs, three EKGs, two Echocardiograms, two skin biopsies, a muscle biopsy, and full genetic testing. Still there were no answers.

Three years after he started experiencing the then-unknown disease, he was admitted to the ER with pneumonia. After being intubated and put on a ventilator, doctors told the family he wouldn't recover. He was still able to survive with a feeding tube and tracheotomy and could say a few words to his family.

In the next three and a half years, Daniel became immobile and eventually could not talk or move. In spring 2018, he began having seizures, sometimes up to 18 times a day. He was admitted to an epilepsy monitoring unit and entered into a coma. He was later brought home, and in February 2019, he died at age 24.

The family didn't learn he had sporadic CJD until a brain autopsy was conducted.

Strides for CJD events will be held at several locations around the U.S. on Oct. 2, 3, 9 and 10. Strides for CJD – Fairfax will happen at 8:30 a.m. on Oct. 10 at Burke Lake Park, Shelter A, 7315 Ox Road, Fairfax Station. Registration is $30 for adults and $20 for youths 12 and under. Registration is available at strides4cjd.com.