Alzheimer’s Dinner

Legacy members convened in January 2018 for a dinner and discussion on how philanthropic engagement with Alzheimer’s and other diseases can help bridge the gap in critical research.

From the many perspectives we considered during the evening, here are a few of the key themes we identified:

Obstacles:

  • Privacy
    • This issue is so personal, and sharing can be difficult, but that’s also where the motivation/inspiration comes from
    • The privacy issue stems partly from how different a disease Alzheimer’s is—you live in denial for a long time
  • Research sharing
    • There’s a need to require grantees to share their research and report back on their findings and learnings, rather than hoarding it—not sharing research plays a part in preventing us from solving solvable things
    • When teams do share research and resources, how can we maximize the usefulness?
    • How do we navigate the intense politics between research institutions to support successes in the overall field?
    • Funders can rise above politics and mandate collaboration and research sharing from their grantees

Factors, prevention, and how to detect it:

  • Short term memory goes first—it’s easier to remember siblings than children
  • Diagnosed through blood test and spinal tap as well as cognitive questions, clock test
  • Inflammation plays significant role, but is not fully understood
  • There may be genetic markers
  • There are likely multiple forms of Alzheimer’s
  • Suggested for prevention: exercise, being social, and eating a Mediterranean diet

Part the Cloud’s approach (led by Legacy member Mikey Hoag):

  • Funding focus on early human trials, where Mikey sees biggest gap in research funding
    • For all disease funders: Identify where the gaps are—how can I make a meaningful difference?
    • Backing up the trials even earlier, before diagnosis, for those with family members who were affected—trying to prevent it in people who have a likelihood of diagnosis
    • Most of the treatment is currently post-diagnosis, because we don’t quite understand it yet—but prevention is also important, just not well understood
    • Importance on having narrow, laser focus—Silicon Valley operating principles can be effectively applied across all disease funding to focus on specific issues and measurable results
    • Riskiest things are hardest to get funded, but that’s what moves the science forward
    • Provide add-on grant bonuses to the research teams that show the best results
  • Part the Cloud raised $20M for Alzheimer’s research in 6 years

Value to society:

  • Enormous societal cost from untreated Alzheimer’s—better to fund research than long-term care for Alzheimer’s patients
  • Alzheimer’s costs the U.S. government $279B/year; 5 years ago, the government only dedicated $500M to Alzheimer’s
  • Three years ago, the U.S. formed a committee to tackle the problem of how to solve Alzheimer’s by 2025—invest yearly $2B in research to move 10 novel drugs forward
  • Many big pharma companies are giving up to a certain extent, since the costs can be up to $800M and as much as 30K patients are needed in trials, very few drug companies still play in this space
  • Bill Gates has announced that this is a personal priority and pledged personal funds; when someone like Bill Gates acknowledges this need, makes others recognize this as a priority and they should pay attention

Resources that were mentioned: