Nominations Open for the End Brain Cancer Initiative's 2025 National Patient Disease Education Initiative and HOPE Award
REDMOND, WA, UNITED STATES, March 18, 2025 / EINPresswire.com / -- Nominations Open for the End Brain Cancer Initiative 's 2025 National Patient Disease Education Initiative and HOPE Award
Redmond, WA (March 18, 2025) – Each May, for over a decade, the End Brain Cancer Initiative (EBCI) has presented the National HOPE Award to a brain cancer patient who deeply inspires us with their courage and story. EBCI established this patient disease education initiative and award to highlight exceptional people who have done exceptional things during their brain cancer journey, all while inspiring others.
The deadline for submitting HOPE Award nominations is April 16th, 2025. To submit a nomination, people can visit https://endbraincancer.org/hope-award-nomination/.
Patrick 'Paddy' O'Donnell is the 2024 National HOPE Award recipient. Paddy was a 20-year-old collegiate ice hockey goaltender at the University of Utah when he had a seizure. He woke up in the Neuro ICU connected to tubes and monitors wondering what happened. A biopsy revealed he had Glioblastoma (GBM) and three tumors. Paddy was nominated by his mother, Anne O'Donnell. 'Paddy had to create his own HOPE and sought answers and second opinions about his treatment,' she said. 'End Brain Cancer Initiative was vital in our search, at the most critical time, availing us of options and direct contact with experts in the field whom Dellann knew personally.'
The 2025 HOPE Award recipient will be announced during the End Brain Cancer Initiative's Know All Your Treatment Options (KAYTO25) online patient disease education event/webinar on May 16th, 2025. This free annual online event is designed specifically for members of the brain tumor, brain cancer, and metastasized brain tumor community to hear directly from top specialists, including researchers, in the field about advanced and FDA approved treatment options, clinical trials, devices, diagnostics, etc. that they may not have heard about and to 'DIRECTLY CONNECT' this patient population to many of these specialists. The event is free to attend due to corporate sponsorships, but pre-registration is required: endbraincancer.org/know-all-your-treatment-options-2025/.
About the End Brain Cancer Initiative
To support/donate to the End Brain Cancer Initiative's increased access and health delivery for patients, mission, services and programs, please visit EndBrainCancer.org
The End Brain Cancer Initiative (EBCI) is a 501(c)3 non-profit patient advocacy organization focused on disease education, awareness, outreach, increasing patient access and improving Standard of Care. The End Brain Cancer Initiative, formerly known as the Chris Elliott Fund (CEF), is dedicated to ensuring that all patients diagnosed with brain cancer, a brain tumor, or metastatic disease to the brain have equal access to advanced diagnostics, treatments, specialists, and clinical trial participation. We believe that IMMEDIATE ACCESS to these options provides this patient community with the best HOPE for survival and sustained quality of life. We partner with industry, patients, researchers, advocacy groups, medical teams, hospital networks and others to educate patients and their caregivers so they can have empowered conversations with their medical teams. Learn more about the End Brain Cancer Initiative at EndBrainCancer.org.
Dellann Elliott Mydland, End Brain Cancer Initiative, 425-785-8489, [email protected]
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Scientific American
an hour ago
- Scientific American
Bariatric Surgery Does Not Resolve Weight Stigma for Everyone
Rachel Feltman: For Scientific American 's Science Quickly, I'm Rachel Feltman. While the use of weight-loss drugs is on the rise, they join a suite of already-common interventions known as bariatric surgeries. The procedures used vary, but generally, bariatric surgeries involve removing, restricting or rerouting parts of the gastrointestinal tract to change the amount of food the stomach can digest or absorb. More than half a million people undergo bariatric surgery globally each year. The reasons for pursuing surgery are complex. But a quick Google search makes one thing clear: these procedures are most often framed—and marketed—as tools for weight loss. On supporting science journalism If you're enjoying this article, consider supporting our award-winning journalism by subscribing. By purchasing a subscription you are helping to ensure the future of impactful stories about the discoveries and ideas shaping our world today. That framing matters because in the U.S. research suggests that more than 40 percent of adults report experiencing weight stigma, or discriminatory attitudes or behavior based on body size, at some point. Such discrimination can obviously impact a person psychologically, but it can also make it harder for them to access good health care. You might assume that weight loss would reduce that stigma—or even make it disappear entirely. And while that's true for some people who undergo bariatric surgery, a significant number don't have that experience. Our guest today is Larissa McGarrity, a clinical associate professor for the School of Medicine at the University of Utah. She followed people after surgery to get a better understanding of how weight stigma impacted their lives. Thanks so much for coming on to chat today. Larissa McGarrity: Thank you. I'm excited to be here. Feltman: So how did this study come about? What led you to research the question of how weight stigma intersects with recovery from bariatric surgery? McGarrity: Sure. Really, it was inspired by my clinical work. I'm the lead psychologist at the University of Utah's comprehensive Weight Management Program, and after seeing hundreds of patients with severe obesity for assessments and therapy it's just so clear to me that the way these patients are treated in the world and the resulting way that they see themselves is a key factor in their overall mental and physical health. And this research really helps to support that growing body of literature that suggests the same thing. Feltman: Yeah, so can you walk us through how the study works and what your findings were? McGarrity: Sure, so we studied 148 patients who had had surgery at the University of Utah, and we repeated some psychological and social measures on these patients before surgery and then one and a half to three years after they underwent bariatric surgery in our program. And what we looked at for this study was the amount of weight stigma that they reported experiencing. And by weight stigma, I mean experiences of being devalued socially—experiencing judgment, discrimination and other mistreatment—as well as challenges physically and emotionally with being able to fit into public spaces and feeling like they belong in the world. And we looked at the difference from before surgery to after surgery and saw that there was an improvement for patients in the amount of weight stigma that they experienced, which is a good thing, and that that improvement was associated with some of the mental health outcomes we're really interested in: so depression, anxiety, binge eating, disordered eating—also, actually, lower weight in this case. But what we also saw on the flip side is that a significant proportion of patients, about 42 percent of them, still reported experiencing weight stigma at this [roughly] two- to three-year time point post-surgery. And for patients who did, they were at elevated risk for these mental health concerns, so stigma continues to be important in the years after bariatric surgery. Feltman: Mm, obviously, these results might sound counterintuitive to some people. What do you think is behind the continued stigma people are facing and the impacts that that seems to have on their health? McGarrity: Well, stigma doesn't just go away with weight loss, and I think there's a couple pieces to this. One piece is that bariatric surgery does not typically result in patients suddenly being in what we'd consider to be the typical BMI range. It results in significant weight loss. It's the leading evidence-based treatment for severe obesity. But really, bariatric surgery is about the metabolic effects and improvements for their function; their quality of life; remission of diabetes, hypertension, other medical issues. And so in our sample for this study we saw that the BMI change was significant but still resulted, on average, in patients still being in a category that's technically considered obesity if we were looking at BMI alone. So the fact that their bodies do not conform still, years after surgery, to what society would deem to be this unrealistically thin ideal makes it so that they are certainly still susceptible to these experiences of weight stigma and discrimination. And then the other piece to it is: a big piece of weight stigma is the way we see ourselves. Feltman: Mm. McGarrity: It's not just the way that we're treated but the way we internalize those messages in ways that are harmful for our mental and physical health, and bariatric surgery does not automatically make that disappear or change someone's body image and perception of themselves. Feltman: Could you unpack some of the ways that stigma could be driving poor health outcomes? McGarrity: Absolutely. Well, we know from the general literature, outside of bariatric surgery specifically, that weight stigma is related to a variety of negative mental and physical health implications. We know that independent of a person's baseline BMI and dependent on where their weight starts, their risk for the development of obesity, the exacerbation of obesity over time is predicted by weight stigma. And this probably happens in a few ways. We know that when people experience stigma it is a chronically stressful experience, and the effect of chronic stress on inflammation in the body and our physical health is significant. Another piece of it is health behaviors. So when you think about the health behaviors most people are trying to encourage when they inadvertently make some of these stigmatizing comments, [people] like health providers, it tends to result in being more demoralized and less likely to be motivated to engage in healthy physical activity or adaptive eating behaviors. And so those health behaviors then impact our weight and our health. And then there's also just aspects of social disconnection. When you experience stigma it often affects your entire social network and the interactions that you have interpersonally with the people around you, and we know social disconnection has a big impact on our overall health. And then the last area I would say is health care avoidance. When we think about having these experiences, especially in health care settings, it doesn't really promote wanting to then go to providers where you know you might be judged before you even speak. So several pathways that I think really influence our over—overall mental and physical health. Feltman: What do you think the takeaway should be here for people who might be considering bariatric surgery or providers who counsel patients on getting this kind of treatment? McGarrity: I think an important component is that the bariatric surgery clinical team can't directly change the amount of stigma that patients face out in the real world or in their personal lives. A little bit of a picture of what the experience is like for patients by the time they present for surgery—I think it can be helpful to sort of imagine this experience, imagine spending your whole life dealing with weight struggles and associated physical health challenges, in many cases. You undergo 10 or more serious attempts to lose weight through various fad diets that feel like starving yourself, exercising consistently, meeting with doctors and dieticians and psychologists, sometimes taking medications to assist. And with each attempt you usually regain all the weight, plus 8 to 10 percent. And you keep hearing the same message: 'Just eat less. Just exercise more. Just try harder.' This leaves you each time feeling more like a failure, blaming yourself for not having enough, quote, 'willpower' and experiencing stigma from your loved ones, your health care providers, strangers alike—just this idea that something's wrong with you or that you're lazy because of a chronic health condition. And it's not hard to imagine under those circumstances that mental health challenges would arise and, for many people, an unfortunate self-fulfilling prophecy: this idea that, actually, we have worse eating and sedentary behaviors when we're stigmatized, sometimes binge eating or other eating disorders, and ultimately risk for further weight gain and the development of comorbid medical problems. I think it's important to know that this cycle's not the exception; it's actually the norm for patients we see. This clinical picture's so common, and by the time a patient comes to surgery they've usually had many years of these negative messages from the people around them and society in general about their bodies and what that means about their value. The stigma's pervasive and harmful, and the key takeaway here is that it doesn't just go away with weight loss, it doesn't just go away after bariatric surgery, and that stigma may actually be a more important component of patient mental health in the years after surgery than weight or weight loss is. But what we can do is not be one more place where that stigma is perpetuated. We can provide accurate information about weight and how complex it is and that it's not as simple as this 'Just eat less; just exercise more' message that patients get constantly for years by the time they've come to an office to consider bariatric surgery. We can really focus on treating the whole person and their whole health and I think really [focus] on weight stigma as a core piece of that health picture, the same way we would consider any other risk factor for their health. We should have those conversations explicitly with patients. We should acknowledge the experiences that they've had and [that] that's been a piece of their mental and physical health currently and will likely continue to be a piece of it, even in the years after surgery. So I think the emphasis on the kinds of conversations we can have with patients so that they know we see them as a whole person, they know that we see the complexity of what has contributed to weight gain over time and that we wanna work with them on not just their physical health but also their mental health and how they've internalized some of these messages over time to make surgery most successful for their quality of life. Feltman: And what about the implications for health care for higher-weight patients outside of bariatric surgery? McGarrity: I think an important message is: you know, to the extent possible, even though these messages and stigma are everywhere—they're in the media, they're in public health messaging, they're in their doctors' offices—a really important aspect is recognizing that we do have some control over the extent to which we internalize those messages and some control over the conversations that we can have with friends and family members who may be perpetuating some of this. And it shouldn't be on the person who's struggling with their weight to educate everyone around them, but the reality is that sometimes that does fall on the person who has the weight challenges, right? That it's important to have conversations to educate the people around you and also for yourself to know that you have worth and value as a person that has absolutely nothing to do with what your weight or shape or size is. Feltman: Given the really long-term relationship with weight loss that patients tend to have before turning to bariatric surgery and the connection you saw between weight stigma and negative outcomes, what do you think could change about health care to maybe help some of these patients get better health outcomes before getting to the point where they're considering bariatric surgery? McGarrity: Yeah, that's a great question. A lot of researchers have been advocating for a weight-neutral approach to health care, even in weight-management clinic settings. Bariatric surgery is a metabolic surgery; it's much broader than just weight loss and results in improvement in medical conditions, in overall health and function, and so we don't need to focus on the number on the scale. We don't need to focus so much on weight, whether it's in a bariatric surgery setting or primary care or any other health care setting. It's completely possible to work with patients of all shapes and sizes on overall healthy behaviors—and by that I don't mean a fad diet; I mean eating and exercising in a way that makes your body and mind feel good—without weight needing to be the focus. Feltman: Thank you so much for coming on today to chat. McGarrity: Thank you, I appreciate it. Feltman: That's all for today's episode. For more on the topic of weight stigma and health, check out our November 8 interview with Ragen Chastain. We'll be back on Wednesday with something super special: an inside look at the MIT lab where scientists are working to detect gravitational waves. And tune in on Friday for a deep dive on the psychology of Dungeons and Dragons, featuring bona fide D&D celebrity Brennan Lee Mulligan. Science Quickly is produced by me, Rachel Feltman, along with Fonda Mwangi, Kelso Harper, Naeem Amarsy and Jeff DelViscio. This episode was edited by Alex Sugiura. Shayna Posses and Aaron Shattuck fact-check our show. Our theme music was composed by Dominic Smith. Subscribe to Scientific American for more up-to-date and in-depth science news.
Medscape
3 days ago
- Medscape
New HIV Prevention Drug Holds Promise for Australia
Oral preexposure prophylaxis (PrEP) has played a significant role in Australia's reduction of new HIV infections, but experts have sounded the alarm over ongoing challenges. They suggested that new, long-acting injectables have a potential role in ending the epidemic. In 2018, oral PrEP became available on the Pharmaceutical Benefits Scheme (PBS), which provides universal and inexpensive access to citizens and long-term residents. The scheme led to a drastic rise in the use of PrEP. In 2023, the number of people who had taken PrEP in the previous 12 months increased from 6432 to 45,244. While most new HIV infections are among gay and bisexual men (GBM), diagnoses among this group have decreased by 43% in the past 10 years. But general practitioners (GPs) and HIV researchers told Medscape Medical News that despite the great intervention, there were problems related to discontinuation. More than half of new infections occur among patients who were previously on PrEP. A 2023 study found that of all patients who were dispensed subsidized PrEP in Australia, more than 40% had discontinued for more than 6 months. By 2 years after receiving their first PrEP supply, 37.7% of patients were no longer taking it. Access and Discontinuation 'In my clinic, a significant proportion of new infections are among people who took PrEP in the past but stopped it for whatever reason,' Jason Ong, MBBS, PhD, director of Melbourne Sexual Health Centre and professor of medicine at Monash University, Melbourne, told Medscape Medical News . Jason Ong, MBBS, PhD 'That's one of the downsides of oral PrEP: It's contingent on someone taking it appropriately. As good as it is, people get fatigued and don't want to take it anymore and then put themselves at risk.' Benjamin Bavinton, PhD, associate professor of medicine and health at the University of New South Wales in Sydney and group leader of the Biobehavioural Prevention Research Group within the HIV Epidemiology and Prevention Program at the Kirby Institute in Kensington, agreed that discontinuation was an issue but said he wasn't surprised because research suggests that people come on and off PrEP throughout their lives. 'The question to ask is why this is happening. Why were they not able to get on PrEP before they engaged in the risky encounter? What were the barriers they faced in getting back on PrEP? Often, it's them not having enough sex to warrant them being on a daily pill,' he said. But while some patients opt out of oral PrEP, others struggle to access it in the first place. 'There are certain populations who can't access PrEP easily: those who can't access Medicare, such as international students. These are overseas-born men who have sex with men, and we haven't seen the same [HIV] reductions in this group,' said Ong. 'If you can't access it easily, you're not going to use it properly. And because they can't access Medicare, even if they do want PrEP, they're often not getting the right culturally safe advice, and many GPs feel that they're not qualified to prescribe it. Also, these populations may come from countries where PrEP is not well known and may face internalized stigma.' About 60% of new infections in Australia occur among overseas-born GBM, said Bavinton. This finding highlights the challenges they face in navigating the healthcare system, along with language barriers, cultural differences, and concerns about stigma. Sara Whitburn, MBBS, medical director at Sexual Health Victoria and chair of the Sexual Health Special Interest Group of the Royal Australian College of General Practitioners, told Medscape Medical News that she frequently provided advice to overseas-born men on how to buy PrEP online. Sara Whitburn, MBBS 'But that means you need access to the internet and to feel safe and private. It's doable, but it takes more steps, and we know as human beings, the more steps it takes, the less likely we are to do something,' she said. Last year, the government announced a $26 million program to provide subsidized access to PrEP for people living in Australia who are not eligible for Medicare. The program has yet to begin. Long-Acting Injection But as some patients struggle to take or access a daily pill, the FDA has approved a twice-yearly injection against HIV, lenacapavir, which offers almost complete protection against the disease. It has been hailed as the closest thing to an HIV vaccine. A spokesperson for Australia's Department of Health said that the Therapeutic Goods Administration had accepted Gilead's application for evaluation of lenacapavir. But with a price tag of US$28,218 (AU$43,000) per year, experts fear that the government will be unable to agree with the company on an affordable price. 'A long-acting injectable like lenacapavir would be a game changer. It gets rid of the problem of adherence. It makes sense,' said Ong. 'We've had a lot of demand for the injection; people want it…but unfortunately it's just going to cost the government too much money.' Choice is a critical factor for PrEP adherence, and injectables could play an important role in helping Australia reach its elimination goal, said Bavinton. 'It would make a huge difference, so it's really disappointing we may not gain access.' Drug companies need to understand that they can make money by scaling up massively and lowering their cost. 'Last year in Australia, 50,000 people had a prescription for PrEP. It's not a small market. But there's no way any country that subsidizes medicines based on cost-effectiveness will bring such drugs into the market with the current prices they want,' Bavinton added. 'It's about having options,' Whitburn agreed. 'We need a range of options to suit people because taking PrEP every day does not suit everyone.' Last year, the government couldn't agree with ViiV Healthcare on the price for another HIV prevention drug: a bimonthly long-acting injectable drug, cabotegravir. This impasse suggests that lenacapavir (which has the brand name Yeztugo) will likely face the same problem. 'Yeztugo would be considered for PBS listing if an application were received from the responsible pharmaceutical company,' the Department of Health spokesperson told Medscape Medical News. 'The government cannot list Yeztugo on the PBS without a recommendation from the Pharmaceutical Benefits Advisory Committee (PBAC).' When recommending a drug for listing, the PBAC considers its clinical effectiveness, safety, and cost-effectiveness. As Australia enters the tail end of the epidemic, it is essential for focus — and money — to remain on the goal, said Ong. 'Investment should go up at the tail of any infectious disease,' he said. 'It will cost more money at the end because we need to find the people who are already infected and protect the rest. But unfortunately, most people won't have that perspective.'
Associated Press
01-07-2025
- Associated Press
Genenta Announces Long-Term Follow-Up Observations in Brain Tumor (GBM) Study with Emerging Survival Signals
MILAN and NEW YORK, July 01, 2025 (GLOBE NEWSWIRE) -- Genenta Science (Nasdaq: GNTA), a pioneer in immuno-oncology, today announced that a total of 38 patients were enrolled in newly diagnosed glioblastoma multiforme (TEM-GBM) study, with 25 patients receiving Temferon. Two patients have been enrolled in the TEM-LT long-term follow-up study, surviving three years from the time of 1st surgery. One of these long-term survivors has not experienced disease progression following Temferon administration and has not required any second-line therapies. The other showed initial signs of disease progression that subsequently stabilized without additional therapeutic intervention. Both these cases suggest possible Temferon-mediated control of disease progression, which warrants further investigation in larger studies. As of the April data cutoff, the survival rate at two years in the GBM trial for unmethylated MGMT (uMGMT) patients remained consistent at 29% with median overall survival holding steady at 17 months. In historical cohorts, uMGMT patients receiving standard of care have shown a two-year survival rate of approximately 14% and a median overall survival of 13 to 15 months. In parallel, the TEM-GU Phase 1 study—designed to enroll 12 patients with genitourinary tumors—has begun recruitment. In this trial, Temferon is administered at a fixed dose of 4 million genetically modified cells per kilogram of body weight—a level previously shown to be safe and well tolerated in the TEM-GBM dose-ranging study. Genenta aims to demonstrate the safety and tolerability of Temferon in patients with Metastatic Renal Cell Carcinoma by year-end. The study is designed to evaluate Temferon in combination with immune checkpoint inhibitors or tyrosine kinase inhibitors to assess the potential for immunologic synergy in this patient population. Further clinical updates will be shared once sufficient patient experience has been gained to support meaningful interpretation. Temferon's mechanism of action is based on the reprogramming of the tumor microenvironment, which promotes the activation and durability of adaptive immune responses. A scientific manuscript demonstrating Temferon's potential to enhance and prolong the durability of CAR-T activity in preclinical murine models of solid tumors has been accepted for publication in Science Translational Medicine. ' For the first time, we show that hematopoietic stem cells can be engineered to durably give rise to myeloid cells that localize to the tumor and reprogram its immune environment. In glioblastoma, this strategy induced a pro-inflammatory shift in macrophages and the emergence of tumor-reactive T cells, offering a promising new avenue for immune engagement against one of the most resistant cancers, ' said prof. Luigi Naldini, co-founder of Genenta Science. ' We are encouraged by the consistent clinical signals emerging from our glioblastoma trial, ' said Pierluigi Paracchi, CEO of Genenta Science. 'T hese findings reinforce our confidence in Temferon's differentiated mechanism and support our commitment to advancing the platform. ' About Genenta Science Genenta Science (Nasdaq: GNTA) is a clinical stage immuno-oncology company developing a proprietary hematopoietic stem cells therapy for the treatment of a variety of solid tumor cancers. Genenta's first in class product candidate is Temferon™, which is designed to allow the expression of immune-therapeutic payloads within the tumor microenvironment by bone marrow derived myeloid cells and enable a durable and targeted response. Genenta has completed the Phase 1 trial for newly diagnosed Glioblastoma Multiforme (GBM) patients with an unmethylated MGMT gene promoter, which suggests the potential reprogramming of the tumor microenvironment and inhibiting of myeloid induced tolerance, while allowing the induction of T cell responses, potentially breaking immune tolerance. Genenta has initiated a Phase 1/2a metastatic Renal Cell Carcinoma study that will also include a combination with immune checkpoint inhibitors. Genenta's treatments are designed as one-time monotherapies, but with the additional potential, when used in combination, to significantly enhance the efficacy of other approved therapeutics. Forward-Looking Statements Statements in this press release contain 'forward-looking statements,' within the meaning of the U.S. Private Securities Litigation Reform Act of 1995, that are subject to substantial risks and uncertainties. All statements, other than statements of historical fact, contained in this press release are forward-looking statements. Forward-looking statements contained in this press release may be identified by the use of words such as 'anticipate,' 'believe,' 'contemplate,' 'could,' 'estimate,' 'expect,' 'intend,' 'seek,' 'may,' 'might,' 'plan,' 'potential,' 'predict,' 'project,' 'suggest,' 'target,' 'aim,' 'should,' 'will,' 'would,' or the negative of these words or other similar expressions, although not all forward-looking statements contain these words. Forward-looking statements are based on Genenta's current expectations and are subject to inherent uncertainties, risks and assumptions that are difficult to predict, including risks related to the funding provided by the recently acquired Mandatory Convertible Bond, the completion and timing of Genenta's ongoing Phase 1/2a clinical trial for newly diagnosed GBM patients with uMGMT-GBM, its clinical trial for metastatic RCC or any related studies, as well as Genenta's ability to fund its research and development plans. Further, certain forward-looking statements are based on assumptions as to future events that may not prove to be accurate. These and other risks and uncertainties are described more fully in the section titled 'Risk Factors' in Genenta's Annual Report on Form 20-F for the year ended December 31, 2024 filed with the Securities and Exchange Commission. Forward-looking statements contained in this announcement are made as of the date of this announcement, and Genenta undertakes no duty to update such information except as required under applicable law. This press release discusses product candidates that are under preclinical or clinical evaluation and that have not yet been approved for marketing by the U.S. Food and Drug Administration or any other regulatory authority. Until finalized in a clinical study report, clinical trial data presented herein remain subject to adjustment as a result of clinical site audits and other review processes. No representation is made as to the safety or effectiveness of these product candidates or the use for which such product candidates are being studied. Temferon™ is an investigational product candidate for which the effectiveness and safety have not been established. In addition, Temferon™ is not approved for use in any jurisdiction. Genenta Science Media Tiziana Pollio, Mobile: +39 348 23 15 143 E-mail: [email protected]
