Living on in our hearts forever

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.

Daniel had just turned 18 in the fall of 2012 when he first mentioned blurry vision. Six months later, he could barely walk. Daniel was scared, anxious and depressed. He couldn’t sleep. He struggled to reach for a glass of water and his hands would tremble as he raised the glass. His voice was shaky. His laughter sounded oddly high pitched. He choked on food. His body was failing him and doctors didn’t know why. 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. 

Before Daniel became sick, he had this deep and hearty laugh. He had an awesome sense of humor. Daniel had a smile that just beamed from the inside of his soul out. He was always happy and naturally saw the bright side in every situation. In Daniel’s mind, the world was full of joyful opportunity. He was athletic, a skateboarder, a runner, and a diver. But what Daniel loved most was snowboarding. Daniel wasn’t very talkative. He was a much better listener. He knew how to listen deeply and he heard things you didn’t say. He just understood the subtle fears people carry. He was compassionate and empathetic. You could feel his warmth just standing next to him. One of the things we loved most about Daniel, was how inclusive and welcoming he was. Daniel didn’t know a stranger. He embraced everyone. He had a way of making anyone and everyone feel special, loved, like you were his best friend.

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. We didn’t find out Daniel had CJD until after his death. 6 ½ years living with CJD is one of the longest on record.  Most people only live a few months.

We are sponsoring a Strides for CJD walk in Virginia because we want to educate people about this disease and we need to help find a cure.

 

Event Details:

Date: Sunday, October 15

Location: Burke Lake Park, Shelter A
7315 Ox Rd., Fairfax Station, VA  22039

Schedule of Events: 

  • 7:30am-8:15am: Check-in, registration and T-shirt pick-up in Shelter A
  • 8:30am Walk Begins
  • 10:00am Post-walk celebration with door prizes, water and snacks.
  • 12:00pm: Event Concludes

*Event is on rain or shine*

Text to Give

To donate to our team, text STRIDES2023 Daniel to 50155

About Fundraising

Donations of $250 and above are considered sponsorships.

Sponsorship Levels:

  • Premier: $20,000
  • Diamond: $10,000
  • Platinum: $5,000
  • Gold: $1,000
  • Silver: $500
  • Bronze: $250

Premier, Diamond, and Platinum Sponsors will have their name or logo displayed on participant t-shirts, the Strides for CJD website, and signage. Gold Sponsors will have their name or logo displayed on the Strides for CJD website, and will have their name (not their logo) listed on participant T-shirts and signage. Silver and Bronze Sponsors will have their name listed on the Strides for CJD website only.

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Our Team

Team Badges

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Our Supporters

  • Anthony Cafiero November 2023 $25.00
  • Hagan Barnett November 2023 $25.00
  • Grace Highman November 2023 $25.00
  • Christina Volk November 2023 $25.00
  • Anonymous Daniel Nugent and family October 2023
  • Joan Nugent July 2023 $1,200.00
  • Margaret Lewis August 2023 $1,000.00
  • Anonymous July 2023 $1,000.00
  • Julie Moriarty August 2023 $500.00
  • Diane DuBois Love you Daniel. I know Bill is with you. August 2023 $500.00

Recent Activity

About Strides for CJD

Strides for CJD is an annual walk/run to raise awareness of Creutzfeldt-Jakob Disease (CJD), a rare neurodegenerative disease that has no treatment or cure. Through this event, anyone -- anywhere -- can pay tribute to their loved ones and raise funds for the CJD Foundation, a 501(c)(3) organization.

Funds raised support our programs including:

  • Our 24/7 helpline, support groups, conference, and other family programs throughout the year.
  • Research grants to help scientists make important discoveries and bring us closer to a cure.
  • Medical education to help raise awareness and understanding of prion disease.