Only on News 19: Family shares experience with daughter's rare genetic disorder
Maddox was born completely healthy, while his sister Emery is fighting an extremely rare genetic mutation.
Judge denies landowners' request to be removed from Belle Mina quarry lawsuit
'Getting that diagnosis was devastating,' said Valerie Morris. 'We were led to believe for a while that there was no diagnosis from multiple specialists, and then to get a diagnosis like this.'
Morris is Emery's mom. She said Emery was born with what's known as KIF1A-associated neurological disorder.
'Her twin brother does not have it, and her little brother does not have it either,' she said. 'So her genetic mutation was called de-novo, which is just a spontaneous, just a random thing that happened.'
It's so rare; she's the only one of three people in Alabama with the disorder. There are only around 550 people worldwide with the diagnosis.
Huntsville woman recalls her first concert – 'the infamous and legendary' Ozzy Osbourne at VBC
'She faces speech delays, cognitive delays, issues with gross motor skills, fine motor skills, and then of course, her vision issues too,' said Morris.
Valerie said she pictured a full life for her daughter.
'You feel like you're losing the life that you thought your child would have, and so now it's not only just losing that, but having to accept this new life that is just going to be so challenging for her,' she said.
No matter the challenges, nothing can stop Emery… especially with the help of her other half, Maddox.
'She's very social and very friendly,' she said. 'She's a happy girl. She loves going to school. She goes to our local preschool, and she actually is in a class with her brother.'
That's not to say it's been easy. Her whole life, Emery has worked hard for every ounce of progress.
📲 to stay updated on the go. 📧 to have news sent to your inbox.
'She never complains,' said Valerie. 'She goes to all of her therapy appointments and just tries so hard, and she just has the sweetest personality.'
Although now, three years after the family received her diagnosis, they have a glimmer of hope they didn't think existed.
'They create this medication that usually takes like 18 months to process, and it's literally made specifically for Emery and her genetic makeup,' she said.
The medicine comes from a California nonprofit called 'n-Lorem.'
The founder, Stan Crooke, said they personalize each patient's prescription. No injection is a 'one size fits all.'
'Once we know the genetic cause and we know the sequence of where the problem is, we can create a genetic medicine that uses the genetic code as a zip code to target that specific problem,' said Crooke.
'n-Lorem' took Emery's case in March of 2024.
So far, the nonprofit has successfully treated 11 KIF1A patients across the country, with astonishing results… some can even walk again.
'It's amazing,' said Valerie. 'I just can't believe that there are people out there who wanted to even start this nonprofit. They're doing such special and life-changing work for all these families, so to have someone who's giving options to these people who have no other way is just it's so special.'
There's no guarantee how successful the medication could be, but while they wait, the family said they are grateful and taking life day by day, all while clinging to the hope of a 'more healed' tomorrow.
'She deserves every single little inch and tiny milestone that she reaches, and we just celebrate it big time,' Valerie said.
Emery's family said her condition has not regressed.
'n-Lorem' is currently crafting her medication, and the family hopes it will be ready for her to try early next year.
Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Solve the daily Crossword
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Yahoo
9 minutes ago
- Yahoo
UnitedHealth Stock Is Having Its Worst Year Since 2008. Can It Recover?
Key Points It isn't typical for UnitedHealth stock to finish a year lower than it started, let alone be down more than 40% as it is right now. Rising costs and uncertainty around healthcare reform are just a couple of the issues plaguing the stock. It's trading around multiyear lows, however, and is arguably a cheap buy. 10 stocks we like better than UnitedHealth Group › For years UnitedHealth Group (NYSE: UNH) has normally been a reliable dividend stock. But an abysmal start to 2025 has wiped out many of the gains that investors have achieved in recent years, with its five-year return now in negative territory. Year to date, the stock has fallen by nearly 45%, which is by no means normal for the healthcare stock. In fact, this is the worst it has performed since the Great Recession, when it tumbled by more than 54% in 2008. The big questions many investors are likely asking today are: Can it recover? Or is there more of a downfall to come for this once seemingly unstoppable stock? Big declines aren't the norm for UnitedHealth The past few years haven't been all that great for UnitedHealth, but by and large, this has been a fairly strong stock to own. It has typically outperformed the market. And outside of 2024 -- when it was down 4% -- the last time it finished a year in the red was (as noted) back in 2008, when the U.S. economy was in the midst of the Great Recession and the stock lost more than half of its value. Not only has UnitedHealth normally been a safe stock, it's also been a tremendous growth stock. Consider that if you invested $10,000 into its shares at the end of 2003, then 20 years later your investment would have been worth $181,000. But if you hung on until now, that investment would have fallen to a value of $101,000. While that's still a good return, it spotlights just how significant the decline has been this year, for a stock that's typically known for being a solid long-term investment. Still, the past doesn't predict the future. Why the company might face a tough road ahead The problem with UnitedHealth right now is that it's facing many challenges. Medical costs are up, and there's a lot of uncertainty in healthcare as the federal government looks to cut costs. Meanwhile, the Department of Justice is reportedly looking into UnitedHealth's billing practices. The danger is that the company may face financial repercussions and other headwinds, such as having to change its practices -- or at the very least, incurring higher-than-typical costs due to greater utilization rates. The latter, however, may be a shorter-term trend. Either way, this is a business known for consistently growing its operations, and that may not be a sure thing anymore. While UnitedHealth generated a healthy profit of more than $14.4 billion on revenue of $400.3 billion in 2024, investor concerns about long-term growth appear to be weighing on the stock. In May, the company suspended its outlook for the year; it also announced a change in CEO, with Andrew Witty stepping down for personal reasons and former CEO Stephen Hemsley taking over. Should you buy UnitedHealth stock today? While UnitedHealth stock has done well in previous years, that doesn't mean that it's a surefire bet to rebound soon. The good news is that it still has solid fundamentals. Since it's a key health insurer in the U.S., I'd be hesitant to count it out in the long run. There's some near-term risk and even some long-term uncertainty about how all the changes in the healthcare industry might pan out. But the stock is trading at levels it hasn't been at since 2020, and its valuation is just 12 times its trailing earnings. I think that gives it a good enough margin of safety at its current price, and that buying it today might prove to be a solid move. As long as you're willing to be patient, this can be a good stock to buy and hold. Should you buy stock in UnitedHealth Group right now? Before you buy stock in UnitedHealth Group, consider this: The Motley Fool Stock Advisor analyst team just identified what they believe are the for investors to buy now… and UnitedHealth Group wasn't one of them. The 10 stocks that made the cut could produce monster returns in the coming years. Consider when Netflix made this list on December 17, 2004... if you invested $1,000 at the time of our recommendation, you'd have $636,628!* Or when Nvidia made this list on April 15, 2005... if you invested $1,000 at the time of our recommendation, you'd have $1,063,471!* Now, it's worth noting Stock Advisor's total average return is 1,041% — a market-crushing outperformance compared to 183% for the S&P 500. Don't miss out on the latest top 10 list, available when you join Stock Advisor. See the 10 stocks » *Stock Advisor returns as of July 28, 2025 David Jagielski has no position in any of the stocks mentioned. The Motley Fool recommends UnitedHealth Group. The Motley Fool has a disclosure policy. UnitedHealth Stock Is Having Its Worst Year Since 2008. Can It Recover? was originally published by The Motley Fool Error in retrieving data Sign in to access your portfolio Error in retrieving data Error in retrieving data Error in retrieving data Error in retrieving data
Yahoo
15 minutes ago
- Yahoo
Bristol Myers Squibb and Bain Capital Create New Company Dedicated to Developing Innovative Immunology Therapies that Address the Unmet Medical Needs of Patients
Five immunology assets in-licensed from BMS with potential to address unmet needs for patients with autoimmune diseases, including late-stage asset for lupus Bain Capital leads $300 million financing commitment PRINCETON, N.J. & BOSTON, July 28, 2025--(BUSINESS WIRE)--Bristol Myers Squibb (NYSE: BMY, "BMS") and Bain Capital today announced the creation of a new independent biopharmaceutical company ("NewCo") focused on developing new therapies for autoimmune diseases that address significant unmet needs of patients. The newly formed company launches with five immunology assets in-licensed from BMS and a $300 million financing commitment that was led by Bain Capital. The NewCo has a broad pipeline consisting of three clinical-stage and two Phase 1-ready investigational medicines that each target promising mechanisms in autoimmune diseases. The most advanced assets in the NewCo's portfolio are afimetoran, an oral, potential best-in-class TLR7/8 inhibitor that is currently being studied in a Phase 2 clinical trial for systemic lupus erythematosus (SLE), and BMS-986322, an oral TYK2 inhibitor, which successfully established proof-of-concept in a positive plaque psoriasis Phase 2 trial. Other licensed assets include BMS-986326, a novel, potential best-in-class, IL2 fusion protein that is currently being studied in Phase 1 clinical trials for SLE and atopic dermatitis, and BMS-986481 and BMS-986498, two Phase 1-ready biologics targeting the IL18 and IL10 pathways respectively. The assets licensed to NewCo reflect the strength of BMS's scientific innovation and hold promise to address unmet needs for patients with autoimmune diseases. As part of the agreement, BMS will retain a nearly 20 percent equity stake in NewCo and will be entitled to royalties and milestones tied to the success of each asset. Robert Plenge, MD, PhD, Executive Vice President and Chief Research Officer at BMS, will also serve on NewCo's Board of Directors. This transaction reflects BMS's strategic shift in Immunology research to focus on assets that have the potential to reset the immune system and promote tissue repair. It also further demonstrates the company's sharpened strategy to invest in areas where BMS is best positioned to lead, while enabling the continued development of promising medicines. "These assets have significant potential, and we are confident that this new company will drive their development to ensure greater impact for patients," said Julie Rozenblyum, Senior Vice President, Business Development at BMS. "Bain Capital's exceptional track record in building successful life science companies by providing focused development and dedicated resources makes them ideally suited to advance these assets to realize their full promise." Daniel S. Lynch will serve as the Executive Chairman of the Company's Board of Directors and interim CEO. Mr. Lynch is an accomplished biopharmaceutical industry leader with decades of strategic, management and operational experience at companies spanning many stages of growth. Nicholas Downing, MD, Adam M. Koppel, MD, PhD, and Andrew Kaplan from Bain Capital will also join Mr. Lynch and Dr. Plenge of BMS on NewCo's Board of Directors. "We are excited to partner with BMS and we share their commitment to improving lives through science," said Adam Koppel, a Partner at Bain Capital Life Sciences. "We look forward to working together and leveraging our company creation experience to build out this new platform and advance these distinct assets in an effort to bring innovative, high-quality therapies to patients with autoimmune diseases." "This is a unique opportunity to build an innovative biotech company with a strong scientific foundation and differentiated development capabilities," said Mr. Lynch. "I'm thrilled to have the opportunity to leverage my background and experience to contribute to the success of the company as it seeks to develop much-needed new therapies, and I look forward to supporting BMS and Bain Capital in the build-out of the company's operations." Bain Capital is investing in NewCo through its Life Sciences and Private Equity teams, drawing on over 40 years of supporting the growth and innovation of healthcare companies globally. Canada Pension Plan Investment Board also joined the investment. About Bristol Myers Squibb: Transforming Patients' Lives Through ScienceAt Bristol Myers Squibb, our mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases. We are pursuing bold science to define what's possible for the future of medicine and the patients we serve. For more information, visit us at and follow us on LinkedIn, X, YouTube, Facebook and Instagram. Bristol Myers Squibb Cautionary Statement Regarding Forward-Looking StatementsThis press release contains "forward-looking statements" within the meaning of the Private Securities Litigation Reform Act of 1995 regarding, among other things, the research, development and commercialization of pharmaceutical products, the creation of NewCo and the agreement with NewCo. All statements that are not statements of historical facts are, or may be deemed to be, forward-looking statements. Such forward-looking statements are based on current expectations and projections about our future financial results, goals, plans and objectives and involve inherent risks, assumptions and uncertainties, including internal or external factors that could delay, divert or change any of them in the next several years, that are difficult to predict, may be beyond our control and could cause our future financial results, goals, plans and objectives to differ materially from those expressed in, or implied by, the statements. These risks, assumptions, uncertainties and other factors include, among others, that the expected benefits of, and opportunities related to, the creation of NewCo and the agreement with NewCo may not be realized by Bristol Myers Squibb or may take longer to realize than anticipated, that the assets described in this press release, may not achieve their primary study endpoints or receive regulatory approval for the indications described in this release in the currently anticipated timeline or at all and, if approved, whether such assets will be commercially successful. No forward-looking statement can be guaranteed. Forward-looking statements in this press release should be evaluated together with the many risks and uncertainties that affect Bristol Myers Squibb's business and market, particularly those identified in the cautionary statement and risk factors discussion in Bristol Myers Squibb's Annual Report on Form 10-K for the year ended December 31, 2024, as updated by our subsequent Quarterly Reports on Form 10-Q, Current Reports on Form 8-K and other filings with the Securities and Exchange Commission. The forward-looking statements included in this document are made only as of the date of this document and except as otherwise required by applicable law, Bristol Myers Squibb undertakes no obligation to publicly update or revise any forward-looking statement, whether as a result of new information, future events, changed circumstances or otherwise. About Bain CapitalFounded in 1984, Bain Capital is one of the world's leading private investment firms. We are committed to creating lasting impact for our investors, teams, businesses, and the communities in which we live. As a private partnership, we lead with conviction and a culture of collaboration, advantages that enable us to innovate investment approaches, unlock opportunities, and create exceptional outcomes. Our global platform invests across five focus areas: Private Equity, Growth & Venture, Capital Solutions, Credit & Capital Markets, and Real Assets. In these focus areas, we bring deep sector expertise and wide-ranging capabilities. We have 24 offices on four continents, more than 1,850 employees, and approximately $185 billion in assets under management. To learn more, visit Follow @BainCapital on LinkedIn and X (Twitter). corporatefinancial-news View source version on Contacts Bristol Myers Squibb Media Inquiries: media@ Investors: Bain Capital Scott Lessne / Charlyn LuskStantonslessne@ / clusk@ (646) 502-3569 / (646) 502-3549 Error while retrieving data Sign in to access your portfolio Error while retrieving data Error while retrieving data Error while retrieving data Error while retrieving data
Yahoo
22 minutes ago
- Yahoo
NFL and Eagles Mourn The Passing Of Super Bowl Champion at 38
NFL and Eagles Mourn The Passing Of Super Bowl Champion at 38 originally appeared on Athlon Sports. Eagles fans remember Bryan Braman as part of the championship team that brought home the franchise's first Lombardi Trophy in 2018. And now those memories are mixed with mourning as the former linebacker has lost his battle against a rare and aggressive cancer diagnosis. Braman was 38. Braman's representative, Sean Stellato, recently described the former player's health crisis as 'the fight of his life.'' The agent praised Braman's character, noting how the former player has always embodied the qualities of an underdog who refuses to quit. On Thursday, Stellato posted on social media, "My heart hurts. I love you, Bryan." J.J. Watt, a Braman teammate in Houston, wrote, "Rest in peace, brother. Gone too soon.'' The diagnosis has necessitated intensive medical intervention, including specialized CAR T-cell therapy that Braman received in Seattle. This cutting-edge treatment represents one of the most advanced approaches to fighting certain types of cancer, though it comes with significant physical and financial costs. According to close friend Williams Jones, who organized a crowdfunding campaign to support Braman's medical expenses, the treatment journey was particularly challenging. The combination of chemotherapy and surgical procedures has compromised Braman's immune system, making recovery between treatments difficult. This has created a concerning cycle in which the cancer continues to advance while Braman's body struggles to bounce back. Most troubling is the disease's progression toward vital organs — a development that has prompted Braman and his medical team to explore experimental treatment options. Jones emphasized that despite the setbacks, Braman remains determined and continues researching alternative therapies. The fundraising campaign has drawn remarkable support from the football community, raising nearly $90,000 and surpassing its original target. Among the notable contributors was Watt, who donated $10,000. Watt and Braman share a special bond, having both joined the Texans as rookies in 2011 — though their paths to the NFL were vastly different. Braman's professional football career spanned seven seasons, with his most memorable years coming in Philadelphia. After joining the Eagles in 2014, he became a reliable special teams contributor, appearing in 51 games across three and a half seasons. His career culminated in Super Bowl LII, where he recorded a special teams tackle in the Eagles' thrilling 41–33 victory over the New England Patriots. This story was originally reported by Athlon Sports on Jul 17, 2025, where it first appeared.
