logo
I'm dying of a fatal disease. Bureaucrats shouldn't decide how doctors can try to save me

I'm dying of a fatal disease. Bureaucrats shouldn't decide how doctors can try to save me

Fox News22-02-2025
At age 6, I was diagnosed with a fatal disease. At age 11, I lost my ability to walk. Today, I'm 23 and am fighting for my life — and for all of those who are desperate for a cure.
Tragically, the federal government is standing in the way.
I'm not alone; tens of millions of Americans suffer from rare diseases. And while I believe we have entered a "Golden Age" of personalized medicine tailored around a patient's DNA, regulatory roadblocks often force us to wait years to access treatments that could help. We need to break through this logjam so patients can access cutting-edge treatments today.
My disease is Duchenne muscular dystrophy (DMD) — a rare, genetic disorder that causes my muscles to waste away. Patients lose their ability to walk around the ages 9 to 12 and become completely dependent on a power-wheelchair. Then they noticeably lose function of their arms in their teens, and eventually lose their life in their mid-20s as the muscles responsible for breathing are affected, as well as the heart muscle.
I decided early on not to let this disease define me — or stop me. At 15, I founded a nonprofit organization called Destroy Duchenne. I went on to become a bestselling author, public speaker, Hollywood writer and producer, biotech consultant to five companies, investor, and recognized Key Opinion Leader (KOL) in DMD.
Yet I still know the brutality and pain this disease causes. My younger brother, who is 17, also has DMD. So did my other younger brother, who passed away from the disease at age 14. Duchenne affects not just the person with the disease, but everyone around them, as it steals the person away from those who love them.
Fortunately, I'm optimistic about innovation in the medical field. As someone who works in the biotech industry, I know of countless advances currently in the works that are going to change the way we deal with diseases. With the rise of AI, even more progress can be made faster and cheaper, and drugs can be even safer from their inception.
What is critical with rare genetic diseases is time. It's nearly always better to intervene earlier, as it is easier to preserve existing function and overcome some of the effects of the disease. For example, younger patients with Duchenne tend to have more muscle.
They also tend to have less fibrosis (scar tissue) and fat infiltration — two biological effects of the disease as time progresses, which further reduce mobility. Tragically, some patients are at the end of their life, where days can make the difference between living or dying.
On average, clinical trials for new treatments take around 10 years to complete. By then, a patient's disease may have progressed beyond the point where they can be meaningfully treated — or they may have even passed away. We need legislation like the "Right to Try for Individualized Treatments." It's an innovative reform that's now law in six states that puts the power into the hands of the doctor and patient to make these critical decisions about when to try investigational new drugs that are customized based on genetics.
Right now, I can be willing to try a new treatment, the manufacturer of the treatment can be willing to allow me to try it, and a doctor can be willing to administer it — yet Uncle Sam is not willing and stops me from receiving a lifesaving treatment.
This is completely backwards. After all, doctors know their patients better than a far-off bureaucrat who doesn't even know the patient exists. Why should I have to beg the federal government for permission to try to save my own life?
The reality for me is that I'm going to die, likely before I reach middle-age. The average lifespan for people with Duchenne is 25. But it doesn't have to be that way.
Orange background

Try Our AI Features

Explore what Daily8 AI can do for you:

Comments

No comments yet...

Related Articles

The most common — and scariest — signs you've got a tick bite, as ER visits reach record levels
The most common — and scariest — signs you've got a tick bite, as ER visits reach record levels

New York Post

time34 minutes ago

  • New York Post

The most common — and scariest — signs you've got a tick bite, as ER visits reach record levels

Warning: This story might seriously tick you off. Nearly 31 million Americans are bitten every year by tiny, blood-sucking parasites — and 2025 is no different. Emergency room visits for tick bites are surging nationwide, with July numbers hitting their highest point since 2017, according to the CDC's Tick Bite Data Tracker. 5 Ticks are most active during the warmer months of the year, typically from April to September. RistoH – The Northeast is getting hit the hardest, with the Fordham University Tick Index currently placing New York City in its 'Red Zone.' With Lyme disease and other tick-borne illnesses already on the rise, experts are urging residents to exercise 'extreme caution' when spending time outdoors. To learn more, The Post spoke with Dr. Sindhu Aderson, an immediate care physician at Northwestern Medicine, about how to spot tick bites and, more importantly, prevent them altogether. Where are ticks hiding? It's not just the woods Ticks may look like insects, but they are actually arachnids, closely related to spiders. These tiny parasites vary in color from light to dark brown and are usually no larger than an apple seed. They live across the United States, and they are not limited to forests or rural areas. 'Ticks can be found in well-maintained suburban lawns, vegetation bordering roads or fields, debris piles, and even in and around homes, especially where pets may bring ticks indoors,' Anderson said. 5 Ticks are known to be 'hitchhikers,' often attaching to animals and being transported to new locations. Christian Mí¼ller – Backyards and local parks are also common hot spots, particularly during the warmer months. Aderson noted that aside from camping and hiking in the woods, people often come into contact with ticks while gardening, walking their dogs, golfing or doing outdoor work such as landscaping, farming or forestry. Where do ticks typically bite? Ticks like to hide in warm, moist areas on the body. Aderson said the most common targets are the scalp, around or inside the ears, stomach, groin, armpits and the backs of the knees. She also pointed out that people often get bitten underneath their socks and along the beltline — places where ticks can easily go unnoticed. How can you tell if you've been bitten? Many tick bites fly under the radar. But one key warning sign is a skin rash called 'erythema migrans,' Aderson said. It typically begins as a red spot near the bite and gradually spreads outward like a bull's-eye or target over several days or weeks. Sometimes, though, it appears as a solid red patch or takes on different shapes and colors. 5 Erythema migrans, the most common early sign of Lyme disease, can reach up to 12 inches across. Jerry – More than 70% of people with Lyme disease get the rash, though it can also appear without the bacterial infection ticks often carry. Other common symptoms of a tick bite include sudden fever, chills, fatigue, headache and muscle or joint pain. 'Gastrointestinal symptoms such as nausea, vomiting and abdominal pain may also occur, but are less common in the early phase,' Aderson added. How bad can tick bites get? Let's just say — you definitely want to avoid them. Ticks can spread serious illnesses like Lyme disease, Rocky Mountain spotted fever and babesiosis. They can also trigger allergic reactions ranging from mild itching to life-threatening anaphylaxis. Aderson warned about one of the scariest outcomes: meningoencephalitis, a rare but potentially deadly inflammation of the brain and its lining. Symptoms of the condition include fever, headache, stiff neck, light sensitivity, confusion, seizures and even coma. Left untreated, it can cause permanent brain damage or death. 5 Many tick-borne diseases can have similar signs and symptoms. fizkes – Aderson said tick bites can also lead to: Myocarditis with heart block: Inflammation of the heart muscle that disrupts its electrical system, causing a slow or irregular heartbeat, dizziness, fainting and, in severe cases, heart failure. Inflammation of the heart muscle that disrupts its electrical system, causing a slow or irregular heartbeat, dizziness, fainting and, in severe cases, heart failure. Acute respiratory distress syndrome: Rapid inflammation and fluid buildup in the lungs, leading to dangerously low oxygen levels in the blood. Rapid inflammation and fluid buildup in the lungs, leading to dangerously low oxygen levels in the blood. Disseminated intravascular coagulation: A disorder where tiny blood clots form throughout the body, blocking blood flow and causing both excessive clotting and bleeding, which can damage organs. A disorder where tiny blood clots form throughout the body, blocking blood flow and causing both excessive clotting and bleeding, which can damage organs. Tick paralysis: Muscle weakness caused by neurotoxins in tick saliva, often starting in the legs and moving upward; if untreated, it can lead to respiratory failure. In the worst cases, untreated tick bites can cause multiple organ failure and even death. How do you avoid tick bites? There are some simple steps you can take to protect yourself. 5 Reducing exposure to ticks is the best defense against tick-borne diseases. shishiga – When spending time outdoors, Aderson recommends wearing light-colored, long-sleeved clothing and tucking your pants into your socks to keep ticks from crawling up your legs. She also advises using EPA-approved repellents — such as picaridin, DEET or oil of lemon eucalyptus — on your skin, and treating clothing with permethrin for extra protection. 'After potential exposure, bathing within two hours and drying clothes on high heat for at least 10 minutes are advised to reduce risk,' Aderson said. She said thorough tick checks are also 'essential' after outdoor activities, especially in areas where ticks like to hide — behind the ears, in or around the hairline and anywhere skin folds together. That includes the armpits, groin, under the breasts, between the buttocks, between the toes, inside the belly button and along the back.

Wearable Sensor Will Improve Bipolar Disorder Treatment
Wearable Sensor Will Improve Bipolar Disorder Treatment

Newsweek

time35 minutes ago

  • Newsweek

Wearable Sensor Will Improve Bipolar Disorder Treatment

Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources. Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content. A wearable sensor could make tracking medication levels much easier for people living with bipolar disorder, eliminating the need for blood draws and lab analyses. The first-of-its-kind device could vastly improve treatment, convenience and drug safety for millions of patients who take lithium—a type of mood stabilizer—for bipolar disorder. While lithium is highly effective, it must be administered precisely and needs regular monitoring. Too low a dose, and the treatment doesn't work—but too high a dose can be toxic to patients, with the potential to cause kidney and thyroid damage, or even death. In addition, the correct dose of lithium depends on the individual. In their study, the researchers from the University of Southern California (USC) argue that sweat is an easier alternative to blood for lithium tracking because it can both be collected noninvasively and reflect lithium concentrations in real time. Printed and flexible wearable sensor for lithium monitoring in sweat being stuck to skin. Printed and flexible wearable sensor for lithium monitoring in sweat being stuck to skin. Mohammad Shafiqul Islam, Khan Lab, USC Viterbi School of Engineering Bipolar disorder affects around 5.7 million adult Americans, or about 2.6 percent of the U.S. population aged 18 and older each year, according to the National Institute of Mental Health. The current method of laboratory-based blood draws for tracking can be time-consuming, inconvenient and painful. "While past approaches required collecting body fluids for lab testing or using multiple devices—such as stimulating sweat, applying a color-changing lithium sensor, and then photographing it to estimate levels—our wearable simplifies everything," USC electrical and computer engineer professor Yasser Khan told Newsweek. "It collects sweat and measures lithium levels in one fully integrated, non-invasive device." The newly designed wearable includes a skin-safe, electrical current-based system to induce sweat without requiring physical exertion. In just minutes, the device can collect the data and transmit it directly to a smartphone app, allowing people to track their lithium levels from home (or wherever they might be). This reduces the need for more invasive tracking, similarly to a glucose monitor reducing the need for people with diabetes to check their blood glucose levels with a finger prick test, though they work slightly differently. "Unlike continuous glucose monitors (CGMs) that rely on a needle under the skin, our wearable is sweat-based and sticks on the skin like a simple bandage. While CGMs don't require a sample collection step, our device needs to first stimulate sweat before measuring lithium levels, adding one step, but avoiding needles entirely," Khan explained. The wearable sensor to track lithium has been made possible by the innovative use of something called 'organic electrochemical transistors' (OECTs) specifically designed for lithium detection, according to the researchers. OECTs are electronic devices that respond to ionic signals in liquid, converting them into readable electronic data. Unlike conventional OECTs, the sensor developed at USC features a fully printed OECT using a new material formulation tailored to detect lithium ions specifically. "We developed the entire lithium monitoring system—from the OECT-based sensor patch and on-demand sweat induction to the readout electronics and smartphone app—using a simple, scalable and cost-effective fabrication process," said study author and doctoral student Mohammad Shafiqul Islam in a statement. "Our goal was to make lithium tracking as easy and comfortable for patients as checking a daily fitness tracker." This makes it the first OECT-based lithium sensor to be entirely printed, which is hoped to pave the way for affordable and scalable production. In partnership with psychiatrist Adam Frank at Keck School of Medicine, the device has already been tested by those of his patients taking lithium—gaining positive feedback. Sweat samples were collected using the wearable device and lithium measurements were successfully matched against values derived from bulky commercial sensors. "We conducted a pilot study with three patients, focusing primarily on showcasing the wearable's development. All participants appreciated the convenience of using a simple at-home device compared to frequent lab visits for blood draws," Khan told Newsweek. "The wearable measures lithium levels and displays the concentration on a smartphone, making it accessible to both patients and physicians. Over time, patients can better understand what works for them—for example, one participant noted that a concentration around 0.4 mM was effective. This kind of personalized insight is one of the key benefits of wearable technologies." The new device is hoped to improve safety by allowing for medication dose adjustments that avoid side effects and potential medication toxicity. Keen to keep the momentum going for those living with bipolar disorder, Khan said: "This is a market-ready technology that now needs to be translated from the lab into a consumer device. To reach widespread adoption, a larger clinical study involving hundreds of patients will be essential." The team plans to develop more advanced wearable systems powered by AI to automatically adjust lithium dosage and achieve optimal therapeutic benefits without causing lithium toxicity. Do you have a health story to share with Newsweek? Do you have a question about bipolar disorder? Let us know via health@ Reference Islam, M. S., Kunnel, B. P., Ferdoushi, M., Hassan, M. F., Cha, S., Cai, W., Frank, A., & Khan, Y. (2025). Wearable organic-electrochemical-transistor-based lithium sensor for precision mental health. Device.

Eleos Deepens Post-Acute Care Mission with Home Health, Palliative, and Hospice Care Expansion
Eleos Deepens Post-Acute Care Mission with Home Health, Palliative, and Hospice Care Expansion

Hamilton Spectator

timean hour ago

  • Hamilton Spectator

Eleos Deepens Post-Acute Care Mission with Home Health, Palliative, and Hospice Care Expansion

CHICAGO and BOSTON, July 28, 2025 (GLOBE NEWSWIRE) — Eleos Health, the market leader in AI for behavioral health, announced its expansion deeper into post-acute care, bringing its trusted, purpose-built AI platform to home health, palliative care and hospice settings. At the 2025 National Alliance for Care at Home Financial Summit on July 28 in Chicago, Eleos will showcase how AI can ease documentation burdens, ensure compliance and improve care quality across the post-acute landscape. By 2034, Americans over the age of 65+ will outnumber children 18 and under. The U.S. home hospice market alone is estimated to reach over $75 billion by 2032. The already heavy documentation burden for in-home care providers will explode as these demographic trends continue unless providers can access innovative tools and solutions. Eleos is trusted by leading behavioral health organizations and care systems across the United States. Its AI-powered platform is designed to work seamlessly with providers' existing workflows — including their preferred EMRs — ensuring zero friction and fast adoption in both clinical and community-based settings. 'Post-acute care providers deliver essential support in deeply human moments,' said Alon Joffe, CEO and Co-founder of Eleos. 'They deserve intelligent tools that make their work easier. Eleos is proud to bring proven purpose-built AI systems to this space, supporting care that's more efficient, compliant and compassionate.' Trusted by Providers, Built for the Field Post-acute providers often face unique barriers: limited time between visits, emotionally complex environments, and growing documentation and compliance demands. Eleos helps them work more efficiently by: Whether following up with a client at home or bedside for hospice care, Eleos empowers post-acute providers to stay present with clients and their families without worrying about quality and billing standards. Proven ROI and Operational Impact Since launching in 2020, Eleos has delivered proven outcomes across its partner organizations, including: By improving efficiency and documentation quality at scale, Eleos helps organizations reduce burnout, minimize delays, confidently prepare for audits and streamline reimbursement cycles. That repeatable ROI — on both the clinical and financial side of care — is essential. Innovative Partners Early Eleos strategic partners in home health, palliative, and hospice are organizations staying ahead of the healthcare AI revolution and regulatory shifts while prioritizing provider needs and exceptional patient care. Partners receive early access to tailored functionality, close collaboration with Eleos' product and clinical teams, and the opportunity to shape how purpose-built AI reimagines the post-acute care space. To meet Eleos at the Care at Home Financial Summit or explore a partnership, contact Isaac Greszes at isaacg@ or sign up for a meeting here . About Eleos At Eleos, we believe the path to better healthcare is paved with provider-focused technology. Our purpose-built AI platform streamlines documentation, simplifies compliance and surfaces deep care insights to drive better client outcomes. Created using real-world care sessions and fine-tuned by our in-house clinical experts, our AI tools are scientifically proven to reduce documentation time by more than 70% and boost client engagement by 2x. With Eleos, providers are free to focus less on administrative tasks and more on what got them into this field in the first place: caring for their clients.

DOWNLOAD THE APP

Get Started Now: Download the App

Ready to dive into a world of global content with local flavor? Download Daily8 app today from your preferred app store and start exploring.
app-storeplay-store