My name is Tom Siko.  I was married to Diane for 31 years before she succumbed to the very rare and devasting Creutzfeldt-Jacob Disease.

There are a couple reasons why we participate in this fundraising event.  One, we are fundraising for the CJD Foundation to help provide the much-needed financial support for the foundation. Two, we are taking a day to remember the life of Diane Lynn Siko and support her family and friends.

About Creutzfeldt-Jakob Disease

As stated on the Creutzfeldt-Jakob Disease (CJD) website it is a rare, rapidly progressive neurodegenerative disease.  It is 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.

Mission

The mission of the Creutzfeldt-Jakob Disease Foundation is to

• support families affected by prion disease
• raise awareness
• support medical education and research

The foundation carries out this mission through:

• Family support including a 7-day a week Help Line, 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