We do the Strides for CJD event for a couple reasons. First to honor the memory of Diane (Pighini) Siko who was a loving wife, mother, sister, friend, sister-in-law, aunt, and godmother. Diane died from Creutzfeldt-Jakob Disease (CJD) in August 2012.
Creutzfeldt-Jakob Disease 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 second reason is to raise money for the CJD Foundation. In my specific case the CJD Foundation helped me in many ways. CJD Foundation provided guidance and education to the funeral home I used. After Diane died I attended the family workshops that were held in St. Louis and Cleveland. It helped with my grieving process. The CJD Foundation puts together annual conferences for families to attend where they hear about research projects, progress being made to fight this disease, and provide another way to support families affected by CJD. I have attended 2 Annual Family Conferences in Washington DC, most recently this past July and the other with my daughter Taryn. On the Monday following the conference we participated in the Advocacy Day at Capitol Hill to talk with our state representatives and senators about CJD and prion diseases to educate, create awareness, and gain their support for continuing to provide funds for the National Prion Disease Pathology Surviellance Center.
The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research. The foundation carries 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
If you have the time, please join us at this event, we will be there!
On behalf of myself, Tom, Taryn, and Diane's brother Ron we thank you for your time and generosity!
Tom Siko
Linda Martin $0.00
