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Monday, 16 June 2008

Comments

Dennis Haarsager

Hi, Mr. Haarsager -
I enjoyed your blog entry today on the UCSF YouTube channel. Seems like there is a story here that the broader public would benefit from hearing: the fact that there are many forms of dementia, that they are not well recognized by family members and are not well diagnosed by physicians in the community. This fact has created problems -- families are struggling to get correct diagnoses and, because these diseases often are misdiagnosed, not enough patients are available to enter research studies and clinical trials.

To address these problem, UCSF's neurodegenerative diseases research team is reaching out to the global public -- both the lay audience and other physicians -- through a multimedia Internet campaign including YouTube, a widget and Facebook page. (Links below.)

Their goal is increasing the accuracy of diagnoses for the various forms of dementia, including frontotemporal dementia, (the most common dementia in people under age 60), Creutzfeldt-Jakob disease, Parkinson's with Lewy bodies, etc. Their other goal is providing support for patients' loved ones, through pratical caregiver tips and caregiver testimonials.

The YouTube channel includes interviews with the UCSF neuroscientists. Their team includes Nobel laureate Stanley Prusiner, who discovered the prion (PREE-on), the abnormally shaped protein that causes Creutzfeldt-Jakob disease ("mad cow" is a bovine form).

The UCSF team believes that CJD may well be the first neurodegenerative disease to fall, as they have the best animal and computer models for this disease, and insights into it will offer insights into the more common forms of dementia, including Alzheimer's disease. All dementias involve normal proteins that are misprocessed.

In case you haven't seen all the links:
YouTube channel: http://www.youtube.com/user/UCSFMemoryandAging
The "widget," or electronic badge: http://www.clearspring.com/widgets/4845b6ad5d5f1484, links to educational videos; clinical trial information; donation opportunities; the YouTube channel, and Facebook group. It is promoted to advocacy groups, and caregiver and professional healthcare organizations for emailing and posting on blogs, Web sites and ad networks.

The "Defeat Dementia" Facebook group provides a place to interact, share information, and find or offer support. http://www.facebook.com/group.php?gid=15060128066

All link to UCSF's Memory and Aging Center; here's the direct link to the clinical trials education page: http://memory.ucsf.edu/Research/introduction.htm

Best,
Jennifer

Jennifer O'Brien
Assistant News Director
UCSF News Office

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