Team Josh & the DCO Riders

Dyskeratosis Congenita Team Josh & DCO Riders Giving Page

Josh Friedman lived an amazing life of seventeen years where he touched many people through his humor, courage and tenacity. Josh was diagnosed with DC at the age of eight and was supported by the incredible doctors at the Children’s Hospital of Philadelphia and the AI DuPont Hospital for Children in Delaware along with other researchers and medical providers throughout his entire life. Josh was active at Unionville High School where he participated in drama, sports and many social organizations including Bournelyf Special Camp in West Chester PA. We miss and continued to be inspired by Josh every day and thank all of those that are able to participate or contribute to the team that honors Josh’s memory along with others that have currently courageously fighting or have lost their lives to DC.

Dyskeratosis Congenita Outreach, Inc., incorporated as a 501(c)3 in 2009, was formed to support families affected by DC. The genetic disease most often occurs in children but also affects adults. It’s symptoms are many, including bone marrow failure, gastrointestinal issues, pulmonary fibrosis, oral cancers, but are all linked to problems with telomere maintenance. Every patient affected by the condition has extremely short telomeres.

The rarity of the disease coupled with the extreme variance in symptoms often results in misdiagnosis and inappropriate treatment. DCO exists to spread awareness among doctors, but moreover to support and connect patients dealing with this often terminal illness with resources and expert medical advice. We support any endeavors that expand understanding of DC, its causes and its treatments.

At present, there is no cure for DC. But with the explosion of scientific research around telomere function we remain hopeful science will give us insight into stopping the disease in its tracks.

For more information on Dyskeratosis Congenita Outreach, please go to: www.dcoutreach.org

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josh and ryan

Josh and Ryan

bruce and lisa

Bruce and Lisa

chicago group

Chicago Group

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