If anyone here is involved in Alzheimer's, Parkinson's, dementia, or similar conditions, then I would love to hear from you. I'm creating open source accessibility software to help people who have these conditions, and their caregivers.
Researchers are asking me about ways to add many kinds of telemetry to the mobile apps (such as Apple HealthKit) as well as alerting (such as "take your meds now") and more. The ending of the Alzheimer's data platform is blow for these researchers, and yet it turns out some of the data is really easy to get, if you can get an app on the person's phone or watch.
Yes, I develop BoldContacts, which is a mobile app to help you browse your contacts and connect with them. It features big bold buttons and fonts, and is useful for people who have Alzheimer's, Parkinson's, dementia, and cognitive/vision/motor disabilities.
The app is deliberately small: the goal is to provide a free open source way to help people use their contacts more easily, such as to call their friends, family members, medical providers, and caregivers.
The mission is much larger: to enable caregivers and researchers to extend people's quality of life; this is enabled by creating open source building blocks that care providers (e.g. hospitals, social services, assistive homes) can use to mix-and-match their own apps and content that can help people who are in more advanced stages of need.
Several early adopters at our firm have or know folks affected by this, would be happy to TestFlight. Most are on current iPhones or Watch, specifically for the relevant sensors.
Speaking of accessibility, Apple's “Assistive Access” mode that makes the phone into big buttons removes the answer for "What is today?" from the home screen, which makes no sense.
Do you know any way to get that back, or are you connected to anyone at Apple that can correct this weird oversight? (Before anyone asks, no, the calendar icon isn't live in this mode like it is normally, and shows the wrong day date instead, which is even worse.)
It's also weird the blue (NEW) badge on app icons isn't tappable, only the middle of the icon is tappable. It's as though Apple never watched anyone with cognitive challenges use this mode.
To others who may be interested, Assistive Access makes the phone safe for users without memory or judgment. For example, the device can be set to disallow send/reply unless recipient is in an allow list.
Thank you, I'll email you. Apple's Assistive Access is a good step in the right direction IMHO. Yet as you describe there's a very strange mismatch between the software and actual users.
Disability researchers who are advising me are 100% that accessibility software and hardware really must be be tried much more thoroughly with real world users in real world settings. And the researchers feel strongly that there's no one size fits all. The best approach (currently) that they want is a kit of open source pieces that the researchers can combine and also can tune, to try many more hypotheses quickly. It's a great area for FLOSS.
> But the project’s hefty price tag—an estimated $312 million over 6 years—drew immediate concern from several members of Congress, who asked GAO to conduct a review just 2 months after the initiative was announced.
Many AI and Crypto projects have gotten similar amounts. As a society we decide were to invest our money.
When that decision is removed from society and put in the hands of a few investors we get this result. Money for buzz-word pyramidal schemes while projects that would change the life of millions are stopped.
There is something broken in the economy right now.
> As a society we decide where to invest our money.
It's hard to believe there's any American that doesn't know someone with a family member affected by Alzheimers.
Prevalence:
An estimated 6.9 million Americans age 65 and older are living with Alzheimer’s dementia in 2024. Seventy-three percent are age 75 or older (see Figure 2, page 23).
Of the total U.S. population:
• About 1 in 9 people (10.9%) age 65 and older has
Alzheimer’s dementia.
• The percentage of people with Alzheimer’s dementia increases with age: 5.0% of people age 65 to 74, 13.2% of people age 75 to 84, and 33.4% of people
age 85 and older have Alzheimer’s dementia.
• People younger than 65 can also develop Alzheimer's dementia. Although prevalence studies of younger-onset dementia in the U.S. are limited, researchers believe about 110 of every 100,000 people age 30 to 64 years, or about 200,000 Americans in total, have younger-onset dementia.
The success of a project isn't measured by how lofty the goals are multiplied by the budget it draws. The 'lack of basic project management practices' is pretty damning a statement for something which is expected to have hundreds of millions in budget.
I don't think the problem is with society, or with the economy. The money was already available for this project, and funding was essentially assured.
The problem is that, without putting too fine a point on it, the folks running the National Institute on Aging couldn't find their rear ends with both hands and a flashlight. There is a profound degree of stagnation in some of the National Institutes of Health, and the NIA is no exception, as exemplified by the fact that the current NIA director has been in that role for over 30 years. The leadership group puts out a list of goals for their "strategic directions" every 5 years or so, and to my knowledge, they've never actually achieved any of those goals.
As outlined in the report mentioned in the article [1], the NIA's approach to spearheading this large (for them) initiative basically involved identifying job opportunities, putting out a call for grant applications...and that was it. They didn't bother to articulate any actual vision for the project, nor develop any way to account for how the money would be spent. So at the end of the six-year program, there would have been 100 different projects, storing data in 200 different silos, $300 million spent, and zero to show for it.
In the end, NIA chose to can the initiative rather than open up scrutiny to how they spend the *rest* of their money (their yearly budget is over $4 billion [2]).
is it strange that may 28th a paper titled "A potential association between COVID-19 vaccination and development of alzheimer's disease" was released and just got some reporting done on it 5 days ago?
19 comments
[ 72.2 ms ] story [ 930 ms ] threadResearchers are asking me about ways to add many kinds of telemetry to the mobile apps (such as Apple HealthKit) as well as alerting (such as "take your meds now") and more. The ending of the Alzheimer's data platform is blow for these researchers, and yet it turns out some of the data is really easy to get, if you can get an app on the person's phone or watch.
https://boldcontacts.org
The app is deliberately small: the goal is to provide a free open source way to help people use their contacts more easily, such as to call their friends, family members, medical providers, and caregivers.
The mission is much larger: to enable caregivers and researchers to extend people's quality of life; this is enabled by creating open source building blocks that care providers (e.g. hospitals, social services, assistive homes) can use to mix-and-match their own apps and content that can help people who are in more advanced stages of need.
Speaking of accessibility, Apple's “Assistive Access” mode that makes the phone into big buttons removes the answer for "What is today?" from the home screen, which makes no sense.
Do you know any way to get that back, or are you connected to anyone at Apple that can correct this weird oversight? (Before anyone asks, no, the calendar icon isn't live in this mode like it is normally, and shows the wrong day date instead, which is even worse.)
It's also weird the blue (NEW) badge on app icons isn't tappable, only the middle of the icon is tappable. It's as though Apple never watched anyone with cognitive challenges use this mode.
To others who may be interested, Assistive Access makes the phone safe for users without memory or judgment. For example, the device can be set to disallow send/reply unless recipient is in an allow list.
More: https://support.apple.com/guide/assistive-access-iphone/welc...
Disability researchers who are advising me are 100% that accessibility software and hardware really must be be tried much more thoroughly with real world users in real world settings. And the researchers feel strongly that there's no one size fits all. The best approach (currently) that they want is a kit of open source pieces that the researchers can combine and also can tune, to try many more hypotheses quickly. It's a great area for FLOSS.
Many AI and Crypto projects have gotten similar amounts. As a society we decide were to invest our money.
When that decision is removed from society and put in the hands of a few investors we get this result. Money for buzz-word pyramidal schemes while projects that would change the life of millions are stopped.
There is something broken in the economy right now.
Napkin cost analysis:
• $8.50 per year per patient, or $0.02 per day per patient // via: https://www.wolframalpha.com/input?i=%24352%2C000%2C000+%2F+...
• $0.17 per year per American to fund it // via: https://www.wolframalpha.com/input?i=%24352%2C000%2C000+%2F+...
---
> As a society we decide where to invest our money.
It's hard to believe there's any American that doesn't know someone with a family member affected by Alzheimers.
Prevalence:
An estimated 6.9 million Americans age 65 and older are living with Alzheimer’s dementia in 2024. Seventy-three percent are age 75 or older (see Figure 2, page 23).
Of the total U.S. population:
• About 1 in 9 people (10.9%) age 65 and older has Alzheimer’s dementia.
• The percentage of people with Alzheimer’s dementia increases with age: 5.0% of people age 65 to 74, 13.2% of people age 75 to 84, and 33.4% of people age 85 and older have Alzheimer’s dementia.
• People younger than 65 can also develop Alzheimer's dementia. Although prevalence studies of younger-onset dementia in the U.S. are limited, researchers believe about 110 of every 100,000 people age 30 to 64 years, or about 200,000 Americans in total, have younger-onset dementia.
Source: https://www.alz.org/media/Documents/alzheimers-facts-and-fig...
Biotech companies (including those tackling Alzheimer’s) have gotten much larger amounts from VCs.
The U.S. government also directly funds medical research to the tune of tens of billions of dollars annually.
I guess people must find a reason to bash investors.
The problem is that, without putting too fine a point on it, the folks running the National Institute on Aging couldn't find their rear ends with both hands and a flashlight. There is a profound degree of stagnation in some of the National Institutes of Health, and the NIA is no exception, as exemplified by the fact that the current NIA director has been in that role for over 30 years. The leadership group puts out a list of goals for their "strategic directions" every 5 years or so, and to my knowledge, they've never actually achieved any of those goals.
As outlined in the report mentioned in the article [1], the NIA's approach to spearheading this large (for them) initiative basically involved identifying job opportunities, putting out a call for grant applications...and that was it. They didn't bother to articulate any actual vision for the project, nor develop any way to account for how the money would be spent. So at the end of the six-year program, there would have been 100 different projects, storing data in 200 different silos, $300 million spent, and zero to show for it.
In the end, NIA chose to can the initiative rather than open up scrutiny to how they spend the *rest* of their money (their yearly budget is over $4 billion [2]).
1: https://www.gao.gov/assets/gao-24-106886.pdf
2: https://www.nia.nih.gov/about/budget/fiscal-year-2024-budget
no?