June 16, 2016

Today's Top Alzheimer's News

USA2 SPOTLIGHT 

A June 15, 2016 UsAgainstAlzheimer’s blog post by Stephanie Monroe, executive director of the AfricanAmericansAgainstAlzheimer’s Network, highlighted a partnership with Genius of Caring, a web-based storytelling initiative, and the impact of Alzheimer’s on African Americans. According to the article, “As I watched Kamaria’s story, I’m reminded of how important it is to raise awareness of Alzheimer’s disease and its ramifications within the African-American community, as well as the need for the scientific and medical community to be conscious of the impact of Alzheimer’s on African-Americans. Studies have shown that the risk for Alzheimer’s is disproportionately high for African-Americans, a fact that needs to be reflected in the development and execution of clinical trials.”

A June 15, 2016 PCORI.org blog post highlighted UsAgainstAlzheimer’s work to put caregivers front and center in research with partners the Mayo Clinic and UCSF. According to UsAgainstAlzheimer’s board member Meryl Comer, “Our PPRN has a unique opportunity, using mobile technologies, to longitudinally track both patient and caregiver cognitive vitality. The resulting data could inform clinical research and pinpoint interventions that improve the quality of support services to keep caregivers well.”


MUST READS

A June 15, 2016 Merced Sun Star opinion piece by Dr. Bruce Miler called for better training of physicians in California to diagnose Alzheimer’s early. According to Dr. Miller, “As a neurologist with the UCSF Memory and Aging Center, I have dedicated my professional career to helping patients and families cope with the devastating effects of Alzheimer’s disease. Early diagnosis is the single most effective step to help patients, but more than half of all people living with Alzheimer’s and other dementias have not been diagnosed. Our state is failing to equip physicians and caregivers with the medical knowledge and resources to diagnose the disease early and help patients and families chart an effective management plan…Alzheimer’s can be a cruel disease. While there is yet no cure, early diagnosis and disease management can help ease the burden on patients, their families and the state budget. We urge our lawmakers to support this reasonable budget allocation.” Bruce L. Miller is a professor of neurology at UC San Francisco, and directs the UCSF dementia center.

A June 15, 2016 The Hill opinion piece by Senator Lamar Alexander (R-TN) underscored the importance of passing a “cures” bill to tackle diseases like Alzheimer’s. According to Sen. Alexander, “One prediction is that science will find ways to identify Alzheimer’s before symptoms appear as well as how to slow or even prevent the disease. Today Alzheimer’s causes untold family grief and costs $236 billion a year. Left unchecked, the cost in 2050 would be more than our nation spends on national defense.” Sen. Lamar Alexander (R.-Tenn.) is chairman of the United States Senate Committee overseeing health affairs.

A June 15, 2016 Winston-Salem Journal opinion piece by Sen. Thom Tillis (R-NC) highlighted his support for the EUREKA Act and increasing funding for Alzheimer’s research. According to SEn. Tillis, “Investing in a cure for Alzheimer’s is a classic example of where the head and the heart meet. For those who doubt the federal government’s role in funding research, consider the projection that if by 2025 we can effectively develop a treatment for Alzheimer’s that delays the onset by just five years, then 5.7 million fewer Americans would develop Alzheimer’s by 2050, saving our nation nearly $400 billion in the process. However, in the end, it’s not about the number of dollars at stake. It’s about the number of grandparents, mothers, fathers, and spouses whose quality of life we can improve and extend by relentlessly pursuing the treatment and ultimate cure for Alzheimer’s disease. That’s a cause we can all agree is worth fighting for.” 

A June 15, 2016 Spectrum article explored the use of deep learning to help clinicians predict Alzheimer’s. According to the article, “So it makes sense that researchers might try to apply deep learning to this challenge. “There's a lot of interest in some type of test that would say, ‘This person will go on to develop Alzheimer’s and this person will not,’” says Pamela Greenwood, a psychology professor at George Mason University, in Fairfax, Va. Recently, collaborators from Harvard University, Massachusetts General Hospital, and China’s Huazhong University of Science and Technology designed a program that combines fMRI brain scans with clinical data to make this prediction. They presented the work, which has not yet been published, in May at the IEEE International Conference on Communications in Kuala Lumpur, Malaysia.”


UPCOMING EVENTS AND RELEVANT WEBINARS  

June 21 from 2:30-3:30 p.m. EST - The Patient-Centered Outcomes Research Institute (PCORI)​ and UsAgainstAlzheimer's​ invite you to a Congressional briefing ​next Tuesday in the Dirksen Senate Office Building, ​R​oom SD-430​. T​he focus of the briefing is on: shifting Alzheimer’s disease research from ​a ​researcher-driven to patient-centered ​focus ​​to help accelerate ​the ​development of effective treatments, improve quality of care, and support family caregivers. The  briefing  is ​presented ​by PCORI ​with UsAgainstAlzheimer’s, a partner​ with Mayo Clinic, UCSF/Brain Health Registry, and the University of Florida in ​the first ever Alzheimer's and Dementia Patient and Caregiver Powered Research Network. The briefing's aim is to: raise awareness of caregivers’ needs, highlight​ PCORI’s research and provide health care professionals and advocates an opportunity to discuss where additional research is needed.

June 28th, 12:00pm EST - 1PM EST - Alzheimer's and Dementia PPRN: Opportunities for Collaborations in PCORnet | Join WebEx meeting here (Meeting number: 733 558 176 | Meeting password: 1234) Join by phone: 1-855-244-8681 Call-in toll-free number (US/Canada) 1-650-479-3207 Call-in toll number (US/Canada) Access code: 733 558 176