USA2 SPOTLIGHT

A June 17, 2017 NPR All Things Considered radio segment and article spotlighted UsAgainstAlzheimer’s Board member, Greg O’Brien, who was diagnosed with early onset Alzheimer’s disease eight years ago. O’Brien struggles with the challenges of a new grandchild. Prior to her birth he said, “I feel a little bit, when I think about grandkids, like a shell of myself. So it's kind of bittersweet." But now that she’s here, she gives him strength, "New life. New hope. Something new to live for."

A June 17, 2017 Boston Herald article focused on the call for more African Americans to join Alzheimer’s disease drug trials. Around 20% of Americans with AD are black, but only about 3-5% of trial participants. To these ends, AfricanAmericansAgainstAlzheimer’s hosted an event at Boston’s Hibernian Hall, including “Forget Me Not,” a play about a black family struggling to cope with a family member’s symptoms. According to Stephanie Monroe, AfricanAmericansAgainstAlzheimer’s Executive Director, “Most African-Americans believe memory loss and other symptoms of Alzheimer’s are a normal part of aging. They’re willing to accept these terrible symptoms and challenges. There’s also a stigma. It’s thought of as a mental health issue.”

A June 15, 2017 UsAgainstAlzheimer’s post announced award-winning writer and investigative journalist, Greg O’Brien, as the newest UsA2 Network Board Member. O’Brien has early onset Alzheimer’s, which runs in his family on both sides. According to O’Brien, “Alzheimer’s is personal for me, as it is with all those in the fight. I know the front-line well. I am honored to serve on the board of UsAgainstAlzheimer’s. Co-founders George Vradenburg and his late wife Trish have become family to me, and family to my family. It takes an extended family of supporters to fight Alzheimer’s.”

MUST READS

[subscription required] A June 18, 2017 Financial Times article reported that “The Dementia Discovery Fund, a partnership launched in October, 2015 by the UK government and seven international drug companies to find new Alzheimer’s treatments, has raised almost £100m.” According to the article, “DDF’s scientific strategy is to move beyond the “amyloid hypothesis” — the idea that Alzheimer’s is caused by the build-up in the brain of sticky plaques of beta amyloid protein — that has dominated pharmaceutical development for decades without leading to new drugs.”

A June 17, 2017 The Washington Post article highlighted the story of Gerda Saunders, who is chronicling her dementia journey. She penned, “Memory’s Last Breath: Field Notes on My Dementia,” exploring her life and brain. The book recalls tales from her childhood, weaves in neurological research and accounts of other individuals with dementia. The book closes looking at right-to-die possibilities, reserved for “when people will rightly say, ‘Gerda is no longer Gerda.’ ”

A June 16, 2017 Healthcare IT News article reported on the Precision Medicine Summit in Boston with its focus on genetics, use of mobile technology platforms and artificial intelligence in the future of healthcare. According to Megan Mahoney, Stanford’s Population Health Division Chief of Primary Care, “Precision health is a fundamental shift to a more proactive and personalized approach that empowers people to live healthy lives.”

MUST WATCH

View the paradigm-changing TEDMED talk by Genetic Alliance President and CEO, Sharon Terry. Her family’s experience with a lack of data sharing among medical research institutions, in the interest of competition for funding and publications, illustrates a major impediment to the development of treatments and interventions. She discusses catalytic involvement of “citizen scientists” and the use of crowdsourcing to spur progress.