29-year-old mom receives life-changing Alzheimer's diagnosis: ‘It was very daunting'
At just 29-years-old, the Australian mom has been diagnosed with a rare hereditary form of Alzheimer's disease.
It is the most common form of dementia in Australia – making up 70% of all cases – and is a condition.
'We can't help you at the moment. We don't really know who can'
In January 2020, Kelly's father revealed that she and her siblings had a 50/50 chance of getting Alzheimer's – information she decided to 'pretend (she) was never told'.
'Originally I think I was in a little bit of denial, and I originally said I didn't want to know,' Kelly said.
3 At just 29-years-old, Erin Kelly has been diagnosed with a rare hereditary form of Alzheimer's disease.
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'I sort of stuck my head in the sand and just pretended it wasn't happening for probably the first three years, until I decided that I needed to do something about it.'
Kelly wasn't even half the standard age of diagnosis when her brain scans came back positive for the gene in May last year.
'I got the results saying that I've inherited the gene, and there wasn't much help from there,' Kelly said.
'I'd contacted Alzheimer's Australia and they just said 'Look, we can't help you at the moment. We don't really know who can'.
'I went to a few doctors, a few neurologists – I'd contacted a few people, (but) no one could really help until I got hold of a geriatrician.'
Geriatricians are doctors who specialize in multidisciplinary care for the elderly, which can often include managing several chronic conditions, preventing disease, and general quality-of-life care.
'I saw him for a few visits. He ordered the scans, and then it was only a couple of weeks ago that the scan results came back saying there's evidence of disease in the brain already,' Kelly said.
'From what my doctor was saying, my case is very unique – he's never worked with anyone even close to my age,' she said.
'It was very daunting … very conflicting.'
Kelly said she often had moments of 'hyper vigilance', where she would forget something the way a normal person would and assume the disease had taken hold even earlier than expected.
But it was not long before Kelly sprung into action.
3 'Originally I think I was in a little bit of denial, and I originally said I didn't want to know,' Kelly said.
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'It was, 'All right, well it's not just me (I have to look after) – I've got a child, my brothers, I have cousins … I want to do something about this, there's not enough knowledge out there, it took so long for me to just even be seen,' she said.
With the help of her stepsister Jessica Simpson, Kelly has now launched an online fundraiser, which she hopes will both cover her treatment and raise awareness and research funds for unique genetic dispositions that can lead to Alzheimer's.
Kelly's geriatrician told her the treatment that could best hold off any degradation in her brain function was 'lecanemab' – but getting a hold of it would not be straightforward.
'I just want to make a difference for people like me.'
Lecanemab is not approved by the Therapeutic Goods Administration (TGA), and therefore is not subsidized.
Eighteen-month treatments currently cost about $90,000, and have not been tested on someone as young as Kelly.
3 'She's a great mom to Evie, and I think in general she's just a really easy person to be around,' Kelly's sister, Simpson said.
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'The criteria at the moment to get any help is (being) 50 to 90 years old,' she said.
'I could go on the drug and it might have a reverse side-effect, but they don't know, so I'm willing to be that person to say, 'All right, let's give it a go and see'.'
'I just want to make a difference for people like me.'
Simpson said her stepsister did not give herself enough credit for the effort she is making – not just for herself, but for her family as well.
'She's a great mom to Evie, and I think in general she's just a really easy person to be around,' Simpson said.
'Erin isn't asking for a miracle – she knows there's no cure … she's simply asking for more time. More ordinary days. More little moments. More memories Evie can carry with her when Erin no longer can.'
'If you can help … your support means the world to our family.'
About 480,000 Australians currently live with dementia, according to Alzheimer's Research Australia.
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NBC News
29 minutes ago
- NBC News
New research reveals clues about memory from the brains of 'SuperAgers'
Sel Yackley is a busy woman. She makes jewelry, sings in a choir and knits hats and scarves for the homeless. She also reads with her book club, goes to the gym a few times a week and is active in several civic organizations. According to her Fitbit, she still manages to sleep an average of 7½ hours a night. At 85, Yackley is a 'SuperAger.' That is, someone who is 80 or older and retains the memory capacity — based on delayed word recall testing — of a person at least two to three decades younger. Dr. M. Marsel Mesulam, who founded the Mesulam Center for Cognitive Neurology and Alzheimer's Disease at the Northwestern University Feinberg School of Medicine in the late 1990s, first defined a SuperAger. Mesulam Center researchers reflected on a quarter-century of SuperAger study in an analysis published Thursday in Alzheimer's & Dementia: The Journal of the Alzheimer's Association. Yackley, who is among the nearly 300 people who have participated in the Northwestern University SuperAging Program (NUSAP) since 2000, is proof that impaired memory isn't always a hallmark of aging. 'We are going to be role models for other people who are getting older,' she said. 'Take good care of your health and eat right and be sociable.' Is SuperAging genetic? Yackley, a longtime Chicagoan who hails from Turkey, acknowledges that genetic factors may be contributing to her youthful cognition. Her mother and father lived to be 86 and 88, respectively. On the other hand, Yackley feels her joie de vivre helps keep her mind sharp. 'I think it's partly your determination to live a long life and your activities that enable you to do so,' she said, encouraging older adults to pursue 'things that make you proud.' Yackley's peers in the SuperAger program share a spirit of connection, according to Tamar Gefen, a co-author of the analysis and an associate professor of psychiatry and behavioral sciences at the Feinberg School. 'I don't know if it's necessarily social connections, it's just connections in general,' Gefen said. 'There are people who are connected to the land, there are people who are connected to their ancestry, people who are connected to their grandchildren, who are connected to their art.' Gefen added, 'You don't see a lot of detached SuperAgers.' That said, people can't simply will themselves into 'superaging.' More than 7 million people in the U.S. are living with Alzheimer's disease, according to the Alzheimer's Association, a statistic that's projected to soar to nearly 13 million by 2050. About 1 in 9 people 65 and older have this most common form of dementia. At age 45, the lifetime risk of developing Alzheimer's is 1 in 5 for women and 1 in 10 for men. SuperAgers are defying these odds. 'Genetics is a part of it, definitely,' Gefen said. 'We know that there are major risk genes for Alzheimer's disease, and SuperAgers don't have those genes.' For example, research has shown that people of European descent with two copies of a gene called APOE4 have a 60% chance of developing Alzheimer's by age 85. 'My interest is, are there genes that SuperAgers harbor that can actually protect them against getting Alzheimer's disease?' Gefen said. 'And is there a gene, let's say that's related to the immune system, that is over-expressed in SuperAgers that can be manipulated to then help individuals protect themselves?' As she continues searching for such answers, Gefen said her team's most exciting findings have stemmed from the brains of SuperAgers who have died. SuperAgers' brains may be built differently Gefen and her colleagues at the Mesulam Center have autopsied nearly 80 SuperAger brains and compared them to those of their 'neurotypical' peers. They focused on two indicators of Alzheimer's: protein buildups in the brain called amyloid plaques and tau tangles. 'What we found in memory centers of the SuperAging brain is that there are a lot fewer tau tangles,' Gefen said. 'But interestingly, amyloid or plaque pathology doesn't really differ a whole lot.' Because a number of Alzheimer's treatments single out amyloid plaques, SuperAgers bring such treatment methods into question, Gefen said: 'Are we really targeting the right target if SuperAgers and their peers have similar amounts of amyloid?' Other findings include that SuperAgers tend to have larger entorhinal neurons, which are nerve cells that are key to memory, and more von Economo neurons, which are nerve cells critical to social behavior. 'Our guess is that [SuperAgers] are probably born with these kinds of structural protections,' Gefen said. 'But we're now going really deep into the molecular mechanisms of the cell in order to figure out what is keeping that cell strong.' Dr. Timothy Chang, who wasn't involved in the SuperAger research, works on the opposite end of the spectrum. An assistant professor of neurology at the Mary S. Easton Center for Alzheimer's Research and Care at UCLA, Chang studies and sees patients who have dementia. Analyzing 'outlier populations' such as SuperAgers is valuable to the medical field, he said. 'Those cases are really interesting,' Chang said. 'They can teach us a lot about how, potentially, those people, based on genetics or other lifestyle factors, were able to avoid the disease.' SuperAgers live on in the lab Yackley has toured Northwestern's Brain Bank, where she is 'proud' her own brain will one day be sent for study. She's also making plans to donate the rest of her body to science. 'Hopefully, maybe my heart or my kidneys can be used for transplanting,' Yackley said. 'I don't want to be underground.' In the meantime, Yackley would be grateful to make it to 90, she said. She maintains a to-do list and aims to log about 4,200 steps a day. The retired journalist, travel agent and memoir author is already at work on her next undertaking. 'I am trying to put together a scrapbook of my life, and that's a big project,' Yackley said. Though the prevalence of SuperAgers is unclear, they appear to be uncommon. Gefen and her co-authors noted that during the initial recruitment of study participants, just 10% met the criteria of SuperAgers. Today, 101 SuperAgers ranging in age from 81 through 111 are actively involved in Mesulam Center research. Not all SuperAgers prioritize their health — on the contrary, some defiantly savor their vices — and many have lived difficult lives, Gefen said. But they don't take their cognitive fitness for granted. 'These SuperAgers know that they have a gift,' Gefen said.
Vox
an hour ago
- Vox
What if your earbuds could read your mind?
is a senior technology correspondent at Vox and author of the User Friendly newsletter. He's spent 15 years covering the intersection of technology, culture, and politics at places like The Atlantic, Gizmodo, and Vice. The MW75 Neuro headphones are primarily used to sharpen your attention — with the new and added benefit of giving you a snapshot of your brain health. Paige Vickers/Vox; Getty Images; Neurable For the past few months, when I really needed to get something done, I put on a special pair of headphones that could read my mind. Well, kind of. The headphones are equipped with a brain-computer interface that picks up electrical signals from my brain and uses algorithms to interpret that data. When my focus starts to slip, the headphones know it, and an app tells me to take a break. It sounds like something out of science fiction, but a decade-old startup called Neurable is pioneering the technology, and it's preparing to put the brain-tracking tricks into more gadgets. Earbuds, glasses, helmets — anything that can get an electrode near your head could provide a real-time stream of data about what's going on inside of it. Neurable's technology uses a combination of electroencephalography (EEG) sensors to collect brain data and algorithms to interpret those signals. Beyond measuring attention, the company is now using that data to track and improve brain health. User Friendly A weekly dispatch to make sure tech is working for you, instead of overwhelming you. From senior technology correspondent Adam Clark Estes. Email (required) Sign Up By submitting your email, you agree to our Terms and Privacy Notice . This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply. I want to emphasize again that this technology does not actually read your mind in the sense of knowing your thoughts. But, it knows when you're entertained or distracted and could one day detect symptoms of depression or, on a much more consequential front, early signs of Alzheimer's disease. I came across Neurable on a longer mission to understand the future of health-tracking technology by testing what's out there now. It's one that left me anxious, covered in smart rings and continuous glucose monitors, and more confused about the definition of well-being. That's because almost all health trackers that are popular on the market right now — Apple Watches, Oura Rings, Whoop Bands — are downstream sensors. They measure consequences, like elevated heart rate or body temperature, rather than the root cause of that state. By tapping directly into your brainwaves, a brain-computer interface can spot issues sometimes years before they would show up. It could one day detect symptoms of depression or, on a much more consequential front, early signs of Alzheimer's disease. 'Biologically, your brain is designed to hide your weaknesses: It's an evolutionary effect,' Neurable's co-founder and CEO Ramses Alcaide, a neuroscientist, told me. 'But when you're measuring from the source, you pick up those things as they're occurring, instead of once there's finally downstream consequences, and that's the real advantage of measuring the brain.' Other major tech companies are also exploring ways to incorporate non-invasive brain-computer interfaces into headphones. A couple years ago, Apple quietly patented an AirPod design that uses electrodes to monitor brain activity, and NextSense, which grew out of Google's moonshot division, wants to build earbud-based brain monitors for the mass market. There's also been a recent boom in activity around invasive brain-computer interfaces being developed by companies like Elon Musk's Neuralink and even Meta that surgically implant chips into people's brains. It's safe to say that's not currently a mass-market approach. Still, while all of those mega market cap companies ponder the possibilities of their own brain-powered projects, Neurable's is on the market. It's on my head right now, actually, and it works. The cutting edge of neurotech The Master & Dynamic MW75 Neuro — the $700 pair of headphones I tested — looks like any other set of noise-canceling headphones, except for the badge that reads, 'Powered by Neurable AI.' When you connect them to the Neurable app is when things get fun. Inside the Neurable app is a little video game that lets you fly a rocket ship with your brain — and serves as a proof of concept. The trick is you have to focus on a set of numbers on the screen. The more intensely you focus, the higher the numbers go, and the faster the rocket ship flies. If you start to get distracted by, say, thinking about flying an actual rocket ship, the numbers go down, and the rocket ship slows. It's one of the coolest innovations I've ever seen, if only because it's so simple. The EEG sensors in Neurable's products can pick up a range of brainwave frequencies, which are associated with different behaviors and activities. The beta frequency band provides some information about attention state as well as anxiety, while alpha indicates a mind at rest. While EEG sensors and brain-computer interfaces are most often seen in labs, putting these sensors into a device that people wear every day stands to transform our understanding of the mind. 'Non-invasive EEG is cheap and completely safe,' said Bin He, a professor of biomedical engineering at Carnegie Mellon University, whose lab built a drone you can fly with your mind over a decade ago. 'AI, or deep-learning technology, however has drastically improved the performance of [brain-computer interfaces] to read the minds of individuals.' If you changed the technology's mission from measuring focus to, say, symptoms of depression, you could imagine how an everyday gadget could offer some life-changing interventions. The possibilities are as endless as the list of issues that can affect the brain. The Pentagon has been using Neurable's portable technology to study traumatic head injuries in soldiers, for instance, and that research could have practical applications in sports. Alcaide also mentioned Alzheimer's and Parkinson's as potential targets for their technology. Symptoms for these diseases don't appear for years after onset, but early markers could show up in the kind of EEG data their technology captures from everyday wear. If you changed the technology's mission from measuring focus to, say, symptoms of depression, you could imagine how an everyday gadget could offer some life-changing interventions. For now, however, the MW75 Neuro headphones are primarily used to sharpen your attention — with the new and added benefit of giving you a snapshot of your brain health. This involves starting a session with the headphones on and letting the sensors collect the electrical signals your brain's sending off. Your focus is measured as low, medium, or high, and when you're flagging for a while, the app will prompt you to take a break. You can also turn on a feature called Biofeedback, which plays music of varying intensity in order to nudge your focus toward the high range. The Brain Health reports are still in beta mode but will show you daily estimates of how you're doing in terms of things like anxiety resistance, cognitive speed, and wakefulness. The way you know that the device isn't actually reading your mind comes down to science and a strong data policy. Neurable's technology picks up raw voltage — not actual thoughts — from your neurons and uses AI to decode the data and identify signals associated with focus, the company's co-founder Adam Molnar explained to me recently. Neurable encrypts and anonymizes the data coming out of your head and onto its sensors and then again when it goes to your phone, so it's far removed from any personal data. Furthermore, he said, Neurable has no ambitions to be a data company. 'Our business model doesn't depend on identity. We don't sell ads. So there's no benefit,' Molnar said. 'It's actually more of a liability for us to be able to have data map back to an individual.' It's hard for me to say how much more productive I became thanks to the brain-reading headphones. As with many other health trackers, there's sort of a placebo cat effect: Simply deciding to track the behavior changed my state of mind and made me behave a certain way. So, setting up a focus session inevitably made me pay closer attention to how well I was focusing, how often I took breaks, and if I was choosing to be more mindful. This is actually what makes me so curious about an earbud version of what Neurable's doing. I wear AirPods for most of the day, whether it's taking calls for work, listening to podcasts, or just drowning out the sounds outside my Brooklyn apartment. If these earbuds were also collecting data about my cognitive well-being during all those activities, I'd be interested in knowing what I could glean from that information, if only to better understand what's rotting my brain. And I'm sure plenty of companies would be happy to collect more data about their users' states of mind at any given time. Imagine if the TikTok algorithm knew you weren't interested in something — not because you swiped through it but rather because your brainwaves said so. Neurable's website has mockups of EEG-equipped earbuds, helmets, and smart glasses, and it's clear that the company is eager to move beyond its first product. The company doesn't just want to make gadgets, either. It wants to be the leading platform for brain-powered technology. 'Just like Bluetooth is in every single device, and everyone should have access to Bluetooth, we believe that everyone should have access to neuro tech,' Alcaide told me. We're years away from the most far-fetched applications of brain-computer interfaces, but we're heading in that direction. 'There's so many things you can do with neuro tech, whether it's tracking health conditions, whether it's controlling devices, whether it is understanding yourself better,' he said. 'It would be a disservice to the world if the only solutions that came out were our own.' Neurable is indeed one of many startups trying to bring neuro tech to the masses, although they're the only ones selling a product I'd actually wear in public. Several other EEG-based gadgets out there take the form of headbands, many of which are geared toward sleep health or meditation. A company called Emotiv, which also partnered with Master & Dynamic, will start selling its own EEG-equipped earbuds this fall. It remains to be seen if and when Apple will make brain-reading AirPods, but they've already partnered with a brain interface startup called Synchron, which allows people to control iPhones with their minds (Haven't you always wanted to become one with your iPhone?). This is where we circle back to the point where science fiction meets reality. We're years away from the most far-fetched applications of brain-computer interfaces, but we're heading in that direction. Whether that future ends up looking miraculous or like a Black Mirror episode is up to us — and to the companies, like Neurable, pioneering it.
Yahoo
13 hours ago
- Yahoo
Fears grow about silent siblings with the rise of social media sperm donations
Changing patterns in fertility rates and how Australian women fall pregnant have raised concerns about the rise of informal sperm donation and a lack of national oversight when it comes to the potential for some men to donate heavily in a concentrated area. For years, women have turned to websites, apps and informal groups on social media to find a potential father for their unborn child. A growing trend of women putting off pregnancy until later in life and shortages of sperm and egg donations at clinics has helped lead to a "boom" in informal sperm donations, says Dr Evie Kendal. "Trying to ban informal sperm donation itself will functionally be impossible," the bioethicist from Swinburne university told Yahoo News Australia. "But we can absolutely educate people about the health risks involved in informal sperms donations ... and we can absolutely consider it the same as other forms of donation in terms of having guidelines regarding the number of families that can perhaps be contributed to from a particular donor." While she admits that is a tall task, when combined with making sperm donation through clinics more accessible, "so that people don't feel like they have to run that risk of using an informal donor", that will go some way to mitigating some of the worst risks. "There's risk of exploitation, there's risk of unsafe practices ... and there's the risk that after the fact the donor that might actually demand parental rights and it might be difficult to prove they had engaged in a donation," Dr Kendal said. Related: Aussie parents call for end to stigma around growing 'triangle families' trend At a more societal level, the public health scientist said it's worrying that a donor could provide sperm to a number of women in a given area, leading to a situation where individuals aren't aware of half-siblings they have in the community. "The problem we're seeing at the moment is a sperm donor being used for too many families and creating many half siblings that are potentially even living in close proximity," Dr Kendal told Yahoo. "So these are children who are potentially growing up together and don't know that they're half siblings. And of course, some of those children may, in the future, actually have romantic relationships with each other, not realising that they're half siblings." It sounds unlikely, but that exact scenario has played out in Victoria recently after one Melbourne man donated sperm to 15 women he met via social media groups and a sperm donation app, The Age reported last month. In total he created 27 half-siblings, some of whom reportedly lived within a few kilometres of each other without realising they were related. There are multiple Facebook groups dedicated for men willing to offer up their sperm to women who want to have babies. While some are state based, the top group – Sperm Donation Australia – has just shy of 22,000 members. It was started by Adam Hooper who did not respond to Yahoo's attempts at contact, but last year told told the ABC his Facebook group "put the idea of men donating on the map". Meanwhile Tinder-style apps like Just a Baby: Become a parent promises to let users swipe through various member profiles so they can; "Find People. Make Babies". While informal sperm donation is perhaps impossible to regulate, experts in the space want to see tougher rules for such online groups and apps. Fertility lawyer Stephen Page, who also sits on the board of the Fertility Society of Australia and New Zealand (FSANZ) has raised the same concerns as Dr Kendal about the potential of multiple half-siblings not knowing about each other. "There's no regulation, you can set up a website, you can set up an app and bang the drum and get men coming along saying that they will be donors," he told the ABC last month. He would like to a see system enforced where donors need to provide formal ID to the admin of such online groups which is passed on to a regulatory authority, and men are monitored for the number of donations. Push for more affordable IVF amid declining fertility rate For many people hoping to become parents, cost-of-living pressures are deterring them from fertility treatment, which in many cases has become increasingly expensive in Australia. The average number of children born per woman was 1.51 in 2024, well below the 1.8 just a decade earlier. With Australia posting a record-low fertility rate in 2024, experts say low-cost IVF options will be crucial to addressing the decline in births. A recent survey by Connect IVF found that almost half of Australians surveyed said fertility services were not affordable, potentially leaving same sex couples and others to seek out alternative options. Do you have a story tip? Email: newsroomau@ You can also follow us on Facebook, Instagram, TikTok, Twitter and YouTube.
