I was married to Diane for 31 years before she succumbed to this very rare and devasting Creutzfeldt-Jacob Disease in August 2012,

Our reason for fundraising for the CJD Foundation is we want to help provide the much-needed financial support to meet the needs of the foundation so they can continue to carry out their mission.

I had never heard of this rare disease before Diane was diagnosed with it. The CJD Foundation helped me learn more about it, and they educated the funeral home director on CJD.  After Diane's death, I learned more about the purpose of the CJD Foundation and what it offers to people affected by CJD.  I attended a couple of the Family Workshops which helped me with my grieving process.  I live in the Chicago area and felt the need to travel to Family Workshops held in the Cleveland area and the St.Louis area.  My daughter and I attended one of the Family Workshops when it was held in the Chicago area.  It helped me with a feeling of community by being with people who were also affected by this very rare disease. My daughter Taryn and I attended one of the Annual Family Conferences held in Washington DC. It was well attended and supported by people from all across the country.  It was very educational and encouraging to hear from the people doing various research projects in the Prion Disease and CJD area.  We also participated in the Advocacy Day organized by the Foundation where we met with political representatives on Capitol Hill to educate them about the CJD Foundation, the disease itself, and asked that budgetary money be allocated to National Prion Disease Pathology Surveillance Center in Cleveland, OH  as part of the National Institutes of Health.

We ask for your support and thank you for your support!

About Creutzfeldt-Jakob Disease

As stated on the  Creutzfeldt-Jakob Disease (CJD) website it 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.

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

Tom Siko

To donate to my Strides for CJD text STRIDES2022 to 50155. 

Donations of $250 and above are considered sponsorships.

Sponsorship Levels:

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

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 listed on participant T-shirts and signage. Silver and Bronze Sponsors will have their name listed on the Strides for CJD website only.