by Asmaa Javed | Dec 31, 2015 | Voices of ECD
This is Erdheim-Chester Disease Awareness Week, and Leslie and her husband, Rich, are not only calling attention to the medical condition but raising money for research.
by Asmaa Javed | Dec 31, 2015 | Voices of ECD
A fundraiser was held in honor of former Irondequoit and St. John Fisher College basketball standout, Gurnal Jones, who is battling a rare disease called Erdheim-Chester.
by Asmaa Javed | Dec 31, 2015 | Voices of ECD
An ECD patient is interviewed and quoted in Popular Mechanics on how vemurafenib has changed her life.
by Asmaa Javed | Dec 31, 2014 | Voices of ECD
A video from Memorial Sloan-Kettering Cancer Center in New York features an ECD patient, Rita, who is currently enrolled in the vemurafenib trial. Rita’s is a remarkable story that begins at the 2 minutes, 22-second mark of this 5-1/2 minute video.
by Asmaa Javed | Dec 31, 2013 | Voices of ECD
TV interview of Kathy and Charles, two members of the ECD Global Alliance. The interview explains what motivates Kathy, President of the ECD Global Alliance, to continue searching for better treatment options for ECD and supporting the ECD community.
by Asmaa Javed | Dec 31, 2012 | Voices of ECD
An article about Kit, an ECD patient, and her husband, Rich.
