UCSF and YouTube launched a channel yesterday dedicated to spreading the word on common and uncommon neurodegenerative diseases. Many rare forms of dementia (e.g: Fronto-temporal dementia, Creutzfeldt-Jakob disease, dementia with Lewy bodies) often go undiagnosed due to a lack of information and exposure.
The site’s goal is to get doctors, patients, and caregivers to recognize early signs of the different diseases so that patients can more rapidly get enrolled in important clinical trials. The collaboration grew out of the “Fight for Mike” movement. Here is more from UCSF’s press release:
The channel is the latest outcome of the "Fight for Mike," an initiative by Silicon Valley leaders to save the life of one man — former Apple Computer Inc. and Netscape Computer Corp. marketing wunderkind Michael Homer — that has broadened to a mission to advance scientists’ understanding of Homer’s rare, fatal illness, Creutzfeldt-Jakob disease. Understanding the disease, the UCSF scientists believe, will accelerate advances against the more common neurodegenerative diseases, including Alzheimer’s disease.
Homer was diagnosed with CJD last spring and is being treated at UCSF. The Fight for Mike is led by two of his best friends, Silicon Valley investor Ron Conway and Intuit Chairman William V. Campbell.
The idea to create the video-sharing channel, itself, resulted from a brainstorming session involving UCSF physicians and Silicon Valley entrepreneurs that was hosted last fall by YouTube CEO and co-founder Chad Hurley, a protégé of Homer’s.
…The Homer family had experienced what others had before them — the challenges of navigating the medical system to get a diagnosis of a relatively rare neurodegenerative disease and, later, implementing the necessary care-giving strategies in their home. A public forum dedicated to educating the public about all aspects of CJD – and the other neurodegenerative diseases – could address this need.
The decision was made to create a web page dedicated to CJD on the UCSF Memory and Aging Center Web site. A YouTube channel, the group proposed, could host video for the page as well as well as video on other forms of dementia, including FTD, Huntington’s disease and Alzheimer’s disease. It could also serve as a portal to drive families and physicians to the UCSF Memory and Aging Center Web site for further information.
"I hope that the UCSF channel will provide scientists, researchers, and physicians a valuable communication tool as they search for solutions, and patients and their families another way to help cope with these tragic diseases," says YouTube’s Hurley. "Mike is an inspirational friend, and I am grateful for the efforts that many have made in the quest to advance medical research of neurodegenerative diseases."