Creutzfeldt-Jakob Disease (CJD) is a rare, rapidly progressive neurodegenerative disease, one of several Prion Diseases caused by prion proteins that misfold in the brain. There is no treatment or cure and the disease is invariably fatal.
The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research. We carry out this mission through:
Family support including a 7-day HelpLine, referrals, support groups, and teleconference speaker series
Education and information for families, caregivers, medical professionals, and funeral professionals
Advocacy with political representatives and public policy makers
Annual Family Conference that brings together affected families and prion disease experts
Family Workshops held around the country
Collaboration with scientists, clinicians, medical centers, health authorities, professional organizations, and international patient associations
Communication of current research and Foundation activities via newsletter, social media, emails, and family teleconferences
Research grant program, with international awardees selected by our Scientific Advisory Committee
When signing up to become a fundraiser, you can create a personal fundraising page just for you. This page will allow you to spread the word about your fundraiser. Using this fundraising page you can email friends, family and colleagues easily. Tell them why the Creutzfeldt-Jakob Disease Foundation is so important to you. Encourage them to visit your fundraising page and support your efforts!
Be creative - the sky is the limit!
Here are some ideas to help get your creative juices flowing:
Host a party and send out invitations. Whether it's a birthday or an anniversary, tell your guests not to bring a gift, instead direct them to your personal fundraising webpage and have them make a donation to the Creutzfeldt-Jakob Disease Foundation.
Doing something adventurous? Stepping outside the box? Ask your friends and family to support you by making a donation on your webpage.
Hold a golf outing, a walk or a run. Participants can register and donate right on your webpage.
Collect donations in memory or in honor of a loved one.
All events are subject to pre-approval by the CJD Foundation.