Robin Riddle, CEO of the Brain Support Network. learned about neurodegenerative diseases when her late father, Larry, was diagnosed with Progressive Supranuclear Palsy (PSP) in 2004. With the help of three other caregivers, in July 2004, Ms. Riddle started the “San Francisco Bay Area PSP Support Group.” This Group became Brain Support Network in 2005 with expansion to include MSA, CBD, and LBD.
Over 50% of diagnoses by Neurologists are wrong. Because symptoms of many neurological diseases overlap, clinical assessment is often incorrect, even when the diagnosis is delivered by an experienced neurologist. Without an accurate diagnosis, the recommended treatment may not be on target. The group supports families facing these difficult disorders, and works with physicians and researchers to improve diagnostic methods.
The donation of Larry’s brain in 2007 to Mayo Clinic in Jacksonville, Florida, was Robin’s first organization of a brain donation. In June 2011 the “PSP Genetics Study Group”, including scientists from Mayo, published in Nature Genetics a landmark study using Larry’s brain tissue that identified three new genes linked to PSP. By linking the symptoms and diagnosis with the DNA and chemistry of the brain, scientists are beginning to understand what treatments might be more helpful.
For more information, see https://www.brainsupportnetwork.org/
There are also online support groups for each of these conditions at http://smartpatients.com/
Earlier in her career, Ms. Riddle worked in marketing for high tech companies in Silicon Valley, including Covad, Unisys, and NetGravity. She holds BA and MA degrees from Stanford and an MBA from the University of Pennsylvania Wharton Business School.
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