Brugada Syndrome

New Study Offering Free Plagiocephaly Treatment (an alternative to helmet therapy) in San Diego, California! SAN DIEGO, March 27, 2024 /PRNewswire/ -- The Osteopathic Center for Children & Osteopathy's Promise to Children is now looking for infants 4 months old and younger diagnosed with plagiocephaly (flat head syndrome), which affects 47% of infants in the US. If left untreated, this can cause vision problems, muscular tightness, dental issues, & developmental delays. Qualified infants who enroll in this study will receive gentle, hands-on treatment known as Osteopathic Manipulative Treatment (OMT), which has been proven to address the underlying cause of plagiocephaly, reducing its impact on the child's development more than current treatments, such as helmet therapy. Continue Reading If you think that your child has plagiocephaly/flat head syndrome, reach out to see how you can participate in the study. You may qualify for free Osteopathic Manipulative Treatment (OMT) and up to $550 in compensation! "We use OMT to evaluate & treat the whole body, not just one area of concern. Parents who have brought their children for OMT have seen incredible results. Often when treating them for plagiocephaly, we also see improvement in other conditions such as feeding problems, colic, poor sleep, spitting up, and torticollis (tight neck muscles)," says Dr. Kimberly Wolf, DO, FAAP, FACOP, FAAPO who is one of the leaders in the field of pediatric osteopathic medicine. Parents or referring doctors can visit for more information. About Plagiocephaly Plagiocephaly, known as flat head syndrome, is a condition where an infant's head becomes flattened on one side. Torticollis is characterized by tight neck muscles, restricting an infant's ability to turn their head. Plagiocephaly & torticollis diagnoses have risen nearly 600% since the launch of the Back to Sleep Campaign to reduce Sudden Infant Death Syndrome (SIDS)/Sudden Unexpected Infant Death (SUID) in 1992. It is estimated that ~47% of 3-month-olds may have plagiocephaly. Currently, plagiocephaly management may involve repositioning or wearing a corrective helmet for several months, which mainly addresses the cosmetic aspect of plagiocephaly. About OMT Both published & anecdotal evidence support the success of OMT. A 2023 study in the Journal of Osteopathic Medicine shows that following OMT treatments, there was a statistically significant decrease in the measure of skull asymmetry & head flattening. Additionally, the mom of a patient treated by Dr. Wolf shared, "My child had plagiocephaly as an infant. We were able to bypass having to use a helmet by taking him for OMT treatments & an amazing D.O. OMT is a WONDERFUL thing." The Benefits of OMT: - Administered by a physician. - Non-invasive and gentle. - Evaluates and treats the whole body, not just the head. About the OPT-IN Study The OPT-IN research study provides an alternative to helmet therapy. It hopes to show significant improvements in children receiving OMT compared to repositioning (at-home exercises) in children diagnosed with plagiocephaly. How to Enroll in the Study Healthcare providers in San Diego, CA, who have patients with plagiocephaly should refer families to OPT-IN for screening. Parents who are concerned about the shape of their child's head or whose child has plagiocephaly should contact OPT-IN for more information & to see if they qualify for the study. Children receive treatment in the study free of charge, and families will be compensated up to $550 for their participation. About Us: The Osteopathic Center for Children (OCC) aims to enhance children's well-being through holistic, patient-centered care and to promote osteopathic principles in pediatric medicine. Our mission includes research, education, & supporting physicians in providing osteopathic care to children & families. Social media: Facebook: LinkedIn Media Contact: Kimberly Wolf, DO Osteopathic Center for Children Osteopathy's Promise to Children Phone: 619-693-6303 Email: [email protected] SOURCE Osteopathy’s Promise to Children

NEW YORK, Jan. 4, 2024 /PRNewswire/ -- In a study designed to better understand sudden, unexpected deaths in young children, which usually occur during sleep, researchers have identified brief seizures, accompanied by muscle convulsions, as a potential cause. Experts estimate in excess of 3,000 families each year in the United States lose a baby or young child unexpectedly and without explanation. Most are infants in what is referred to as sudden infant death syndrome, or SIDS, but 400 or more cases involve children aged 1 and older, and in what is called sudden unexplained death in children (SUDC). Over half of these children are toddlers. The study findings come from a registry of more than 300 SUDC cases, set up a decade ago by researchers at NYU Grossman School of Medicine. Researchers used extensive medical record analysis and video evidence donated by families to document the inexplicable deaths of seven toddlers between the ages of 1 and 3 that were potentially attributable to seizures. These seizures lasted less than 60 seconds and occurred within 30 minutes immediately prior to each child's death, say the study authors. For decades, researchers have sought an explanation to sudden death events in children, noticing a link between those with a history of febrile seizures (seizures accompanied by fever). Earlier research had reported that children who died suddenly and unexpectedly were 10 times more likely to have had febrile seizures than children who did not die suddenly and unexpectedly. Febrile seizures are also noted in one-third of SUDC cases registered at NYU Langone Health. Publishing in the journal Neurology online Jan. 4, the new study involved an analysis by a team of eight physicians of the rare SUDC cases for which there were also home video recordings, from either security systems or commercial crib cameras, made while each child was sleeping on the night or afternoon of their death. Five of seven recordings were running nonstop at the time and showed direct sound and visible motion indicative of a seizure happening. The remaining two recordings were triggered by sound or motion, but only one suggested that a muscle convulsion, a sign of seizure, had occurred. As well, only one toddler had a documented previous history of febrile seizures. All children in the study had previously undergone an autopsy that revealed no definitive cause of death. "Our study, although small, offers the first direct evidence that seizures may be responsible for some sudden deaths in children, which are usually unwitnessed during sleep," said study lead investigator Laura Gould, M.Sc., MA, PT, a research assistant professor at NYU Langone. Gould lost her daughter, Maria, to SUDC at the age of 15 months in 1997, a tragedy that prompted her successful lobby for establishment of the NYU SUDC Registry and Research Collaborative. Gould points out that if not for the video evidence, the death investigations would not have implicated a seizure. "These study findings show that seizures are much more common than patients' medical histories suggest, and that further research is needed to determine if seizures are frequent occurrences in sleep-related deaths in toddlers, and potentially in infants, older children, and adults," said study senior investigator and neurologist Orrin Devinsky, MD. Devinsky, a professor in the Departments of Neurology, Neurosurgery, and Psychiatry at NYU Langone, as well as chief of its epilepsy service, adds that "convulsive seizures may be the 'smoking gun' that medical science has been looking for to understand why these children die. "Studying this phenomenon may also provide critical insight into many other deaths, including those from SIDS and epilepsy," said Devinsky, who cofounded the SUDC Registry and Research Collaborative at NYU Langone with Gould. Further research, Devinsky notes, is also needed to determine precisely how seizures with or without fever may induce sudden death. Previous research in epilepsy patients, he says, points to difficulty breathing that is known to occur immediately after a seizure and that can lead to death. This has been found to happen more frequently in epilepsy patients, as it does in the children involved in the study, while they are sleeping face down on the stomach and without anyone witnessing the death. Continuous monitoring of child deaths and improvements in health records to track how often these convulsive seizures precede death, he explains, will be needed for this to be confirmed. Seizure-related deaths are underreported in both people with and without epilepsy. For the study, experts in forensic pathology, neurology, and sleep medicine analyzed each recording for video quality, sound, and motion. From this, they were able to determine which toddlers showed signs of muscle convulsions as a sign of seizures prior to their death and when. Access to the videos was and remains strictly limited to the researchers involved in the study. Funding support for this study was provided by SUDC UK, FACES at NYU Langone Health, and the SUDC Foundation. Additional funding support was provided by the National Center for Advancing Translational Sciences and National Institutes of Health grant UL1TR001445. Besides Gould and Devinsky, other NYU Langone researchers involved in this study are Codi-Ann Reid, BS; and Alcibiades Rodriguez, MD. Co-investigators of the SUDC video study group are Alison Krywanczyk, MD, at the Cuyahoga County Medical Examiner's Office in Cleveland; Kristen Landi, MD, at the New York City Office of the Chief Medical Examiner; Melissa Guzzetta, DO, at the Office of the County Medical Examiner in Middlesex, N.J.; Heather Jarrell, MD, at the Office of the Medical Investigator, University of New Mexico, in Albuquerque; Kelly Lear, MD, at the Arapahoe County Coroner's Office in Centennial, Colo.; Tara Mahar, MD, and Katherine Maloney, MD, at the Erie County Medical Examiner's Office in Buffalo, N.Y.; Declan McGuone, MBBCh, at Yale University in New Haven, Conn.; Alex Williamson, MD, at Zucker School of Medicine at Hofstra/Northwell in Hempstead, N.Y.; Katheryn Pinneri, MD, at the Montgomery County Forensic Service in Conroe, Texas; and Victoria Delavale, MPH, and Daniel Friedman, MD, at NYU Grossman School of Medicine. Media Inquiries: David March 212-404-3528 [email protected] SOURCE NYU Langone Health System

SAN DIEGO--(BUSINESS WIRE)-- Rejuvenate Bio, today announced new preclinical efficacy data for RJB-0402, a gene therapy targeting key disease-mediating pathways. RJB-0402 demonstrated efficacy in a mouse model of arrhythmogenic cardiomyopathy (ACM), an inherited disease caused by mutations in one of several genes encoding desmosomal proteins. A single dose of RJB-0402 was able to significantly improve cardiac function, preserve cardiac structure, and dramatically reduce premature ventricular contractions (PVCs) to normal levels. RJB-0402 was superior to gene replacement regarding its ability to normalize arrhythmias and demonstrated comparable effect on preservation of cardiac structure and function in this mouse model of ACM, which recapitulates human disease by disrupting the structure of the cardiac desmosome. Desmosomal proteins are essential for maintaining the integrity of cardiac muscle and individual muscle cells. Desmosomal protein mutations can disrupt the normal function of the heart and may result in life threatening heart rhythms and other cardiac issues, such as ACM, a rare and severe genetic heart condition that can be debilitating and life threatening. The current standard of care for patients with ACM consists of medications targeting arrhythmia management and heart failure, implantable cardioverter defibrillators (ICDs), and cardiac catheter ablations, none of which are curative. Even with optimal treatment, life-threatening arrhythmias and disease progression still occur, and can lead to heart failure. There are no disease-modifying treatments for ACM, other than cardiac transplant for late-stage disease. ACM therefore presents a profound unmet medical need for patients with the disease. “RJB-0402 shows exciting potential to be a significant breakthrough for patients suffering from this severe, life-limiting disease, who have an urgent need for better treatment options. If this approach proves effective to treat ACM, it would have a dramatic impact on the profound burden this disease has on patients and their families,” said Hugh Calkins, MD, Professor of Cardiology and Director of the Johns Hopkins Arrhythmia Service and the ARVD/C Program. “What makes RJB-0402 especially promising is its superior performance in the ACM nonclinical model, outperforming gene replacement therapies in reducing PVCs. Since RJB-0402 is not a mutation-specific gene therapy, this suggests that it has the potential to address all causes of ACM including those without known mutations, estimated to be 130,000 individuals, rather than being limited to a specific genetic subgroup, like gene replacement therapies,” said Daniel Oliver, CEO & Co-Founder, Rejuvenate Bio. “ARVC is a progressive genetic disorder that can affect multiple generations of family members. One of the first symptoms of ARVC can be sudden cardiac arrest, which can lead to sudden death. Therapies that are agnostic of the individual’s specific mutation are a vital avenue of investigation and we are thrilled to learn of Rejuvenate Bio’s continued progress in this area. This research gives much-needed hope to all families affected by ARVC,” said Alice Lara, President of the Sudden Arrhythmia Death Syndromes (SADS) Foundation. RJB-0402 is a liver-targeting adeno-associated virus vector-based gene therapy that drives over expression of FGF21. Since the doses required to overexpress FGF21 in the liver are meaningfully lower than those required for traditional AAV gene replacement therapies, this approach may have a beneficial effect on the safety pro the investigational product and could also dramatically reduce manufacturing costs. The initial clinical study for RJB-0402 will focus on patients with Desmoplakin-related arrhythmogenic cardiomyopathy (DSP ACM) at high risk of life-threatening ventricular arrhythmias and sudden cardiac death. “We see great promise for this therapy to treat this severe, life-threatening disease and improve the quality of life for patients with DSP ACM and look forward to engaging with the FDA in the near future to align on the requirements to initiate an IND,” said Deborah Ascheim, MD, Chief Medical Officer, Rejuvenate Bio. About Rejuvenate Bio Rejuvenate Bio is a gene therapy company focused on treating chronic disease based upon breakthrough technology developed at the Wyss Institute at Harvard University. Rejuvenate Bio utilizes gene therapy, proprietary targets, and tools to bring treatments to patients suffering from chronic conditions. The company is developing a pipeline of therapies with applications in cardiac and metabolic diseases. The company raised a Series A financing in 2021 led by Kendall Capital Partners, Digitalis Ventures, KdT Ventures and V Capital. Rejuvenate Bio is based in San Diego for more information, visit .