Fshd research news.
Jul 31, 2025 · By Amanda Hill Sr.
Fshd research news Current FSHD Research Center projects are focused on the following areas of FSHD (FSH dystrophy) research: Clinical Research Clinical Care: Develop clinical practice guidelines for the care of individuals with FSHD. 4 million—dollars you have donated and raised—in basic research and our Therapeutic Accelerator initiatives. Jul 5, 2022 · Losmapimod has the potential to be the first drug to treat FSHD The much-anticipated Phase 3 clinical trial of losmapimod has formally begun with the dosing of the first volunteer, Fulcrum Therapeutics announced today. The Cambridge, Massachusetts-based company designed the trial to show whether this drug is safe and effective in slowing the progression of Mar 2, 2025 · Lauren Clarke, 24, from York, was diagnosed aged 14 with facioscapulohumeral muscular dystrophy (FSHD), which prevents her from standing for long periods and interferes with daily tasks. The trial, which is called MANOEUVRE, will take place in Denmark, Italy, the UK, and US, and is planned to begin enrolling patients by the FSHD Global are a leading funder of research into FSHD. New findings from research in mice are challenging longstanding beliefs about the causes of Duchenne muscular dystrophy (DMD), with evidence showing that the genetic disease is marked by abnormalities in muscle stem cells during fetal development — indicating DMD may start in the womb. Sep 26, 2025 · August 2025 FSHD Global Research Foundation recently visited the Murdoch Children’s Research Institute (MCRI) and The Royal Children’s Hospital to review the critical paediatric FSHD research being conducted at these world-class institutions. FSHD Global Research Foundation is bigger than one disease – we are creating a better future for muscles for everyone. Lawrence Korngut, University of Calgary Lay abstract The really good news for FSHD patients is that cures are coming – and fast. The FSHD Society is leading the global charge to find treatments and a cure for facioscapulohumeral muscular dystrophy (FSHD) while empowering individuals and families affected by the disease. Jun 14, 2025 · In a number of company updates, Avidity Biosciences announced the FDA’s openness for an accelerated approval for its investigational agent delpacibart braxlosiran (del-brax) as a potential treatment for facioscapulohumeral muscular dystrophy (FSHD). Jun 11, 2025 · FSHD Europe unites and amplifies the voice of FSHD patients across Europe, raising awareness and interest among all stakeholders, including researchers, clinicians, pharmaceutical companies, regulators, payors, and national patient organizations. This is your trusted hub for updates on scientific breakthroughs, inspiring personal stories, and the work we’re doing globally to accelerate treatments and a cure for Facioscapulohumeral Muscular Dystrophy (FSHD). KUMC’s clinical care team will answer your questions about your health, genetic counseling and testing, physical and occupational therapy, and much more. Network affiliation offers researchers the ability to leverage existing clinical trials infrastructure and common standard operating procedures (SOPs) for handling projects, regulatory approval, data collection and analysis – hastening the Sep 12, 2024 · Fulcrum halts losmapimod development by June Kinoshita This morning, we received news Fulcrum has decided to halt its development of losmapimod (see press release below). Aug 22, 2025 · To achieve our goal, we actively manage a portfolio of research that supports a pipeline for drug discovery. You can find free information on clinical trials and some other clinical studies at ClinicalTrials. It means that a greater number in the 11-state region that CU and UCHealth University of Colorado Hospital serve will have easier access to clinical trials and a team of researchers with long-running expertise in genetic muscle disease. May 13, 2024 · — by admin in Research News Neil Camarta (FSHD Canada) shared this research with us on muscle regeneration Read more: Satellos Announces Promising Preliminary Data in Facioscapulohumeral Muscular Dystrophy Jun 16, 2025 · Novartis has announced an agreement to acquire Avidity Biosciences, which will add three promising late-stage programs, including FSHD, to its neuroscience pipeline. FSHD is one of the most prevalent myopathies, afflicting both children and adults. Jun 11, 2025 · FDA clears accelerated approval pathway for Avidity's FSHD treatment while Phase 1/2 trial data readout approaches. Lucienne Ronco, FSHD Society As part of the Global FSHD Innovation Hub, the FSHD Society has undertaken the […] Filed under: FSHD Research, FSHD Society News Participating in a Clinical Trial or Study Clinical studies are research studies that involve people. Jul 31, 2025 · By Amanda Hill Sr. Mar 26, 2025 · Epicrispr banks $68M to test epigenetic editing on rare muscle disease The startup is using CRISPR tools to stop errant expression of a gene linked to facioscapulohumeral muscular dystrophy, a disorder on the radars of several drugmakers. Nov 7, 2016 · Figure 5: Trends in the funding of research of different types of therapeutic molecules during 2012- 2015. Each year, world-leading scientists, clinicians, and industry partners convene to share discoveries, accelerate translational science, and These images are available for download to use in news articles, blogs, etc. Each issue provides the latest research news, stories about our movers and shakers, practical tips for living with FSHD, resources, and May 13, 2021 · There were no serious adverse events reported. AMRA Medical's recent publication demonstrates the utility of MRI-based muscle composite scores in neuromuscular disease clinical trials. We are Giving Life to Muscles. , Feb. Oct 27, 2025 · The FSHD Society has been working with Novartis since it acquired Kate Therapeutics last year, and we are encouraged to see its continued investment and growing leadership in FSHD research and development. ” While the public may see more of our patient advocacy face, research is equally central to our identity. Jun 16, 2025 · The inaugural meeting of the Project Mercury Global Task Force proved why collaboration is key to success in speeding therapies in FSHD. Recent findings New breakthroughs in FSHD research have led to a further understanding of aberrant DUX4 protein expression in May 19, 2025 · FOR IMMEDIATE RELEASE RANDOLPH, Mass. The complex underlying genetics and poor mechanistic understanding has caused a bottleneck in therapeutic 5 days ago · New research challenges old beliefs. Together, these developments led the FSHD research community to shift its focus towards the development of disease-modifying treatments for FSHD. Nov 14, 2025 · The FSHD Society is the world’s largest advocacy and research organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. This year’s congress highlighted not only the accelerating pace of Based in Reno, Nevada, USA, MyFSHD is a source for education about all-things-FSHD. Together, they reviewed published articles and research in FSHD and sim Aug 1, 2025 · Yesterday, FSHD was officially added to the list of conditions eligible for funding through the Peer-Reviewed Medical Research Program (PRMRP), a federal grant program funded at $370 million in Funded Research See All Research Calgary FSHD Clinical Innovation HUB Test period: One Year Investigator: Dr. We discuss current management options and delve into updates about developments in targeted therapy. Nov 12, 2020 · Regional benefit for FSHD patients The CTRN expansion is good news for FSHD patients in Colorado, Wicklund said. Neurology 96 (7):e1054-e1062, 2021. Over the past two years, the FSHD Society has invested nearly $3. FSHD is a devastating muscle-wasting disease caused by the FOCUS will unify clinical trial, natural history, and patient data By Dr. FSHD Research Center at UR Medicine The FSHD Research Center represents the first concerted international effort to accelerate aggressive and innovative clinical and genetic research to find treatments for people with facioscapulohumeral muscular dystrophy, also known as FSH dystrophy or FSHD. Aug 7, 2025 · A milestone moment for FSHD occurred on 6th August when Epicrispr Biotechnologies administered the first dose of EPI-321 to a patient in their groundbreaking clinical trial. Scientists Drs. Invented CRISPR-inhibition, a novel method for gene knockdown, for FSHD. Explore blog posts, educational webinars, and upcoming events focused on the latest Research Updates. Research and patients networks #FSHD #FacioScapuloHumeral Jun 24, 2021 · The multisite international Facioscapulohumeral Muscular Dystrophy Clinical Trial Research Network (FSHD CTRN) is led by researchers at KU Medical Center and the University of Rochester Medical Center. Published Apr 1, 2025 + Follow These advances in understanding of the molecular mechanisms underlying FSHD led to new opportunities for the development of disease-altering therapies and prompted a substantial shift in focus for the FSHD research community towards the development of targeted treatments for FSHD. Full results from a Phase 2b clinical trial called ReDUX4 (NCT04003974) are on track to be presented at the virtual FSHD International Research Congress taking place this June 24-25. In our recent webinar (see video above Notable research findings Developed the most widely-used mouse model for FSHD preclinical research, the FLExDUX4 mouse. Nov 11, 2025 · No Time to Wait By Erin Saxon, FSHD Society Those living with FSHD face a harsh reality: this is a relentlessly progressive disease with no treatments to slow or stop […] Filed under: FSHD Research, FSHD Society News Oct 30, 2024 · Filed under: FSHD Research, FSHD Society News, General, Health and Medicine, Living with FSHD Jul 7, 2025 · Panelists discuss how exciting ongoing research efforts are expanding similar gene therapy technologies to other muscular dystrophies like FSHD and myotonic dystrophy, using strategies to knock Apr 2, 2024 · Purpose of review This review aims to provide a summary of the pathophysiology, clinical presentation and management options for facioscapulohumeral dystrophy (FSHD). Mar 25, 2025 · Under this agreement, SOLVE FSHD will provide strategic funding to support a drug screening initiative led by Transcripta Bio. Our goal is to equip you with the most current, evidence-based knowledge to support excellence in care and accelerate progress toward effective treatments. Unlocking Real-World FSHD Data The BetterLife FSHD Research Gateway contains contemporary patient-reported data to advance clinical research, inform development programs, and accelerate access to treatment. We are deeply grateful to Fulcrum for this generous gift. Jun 30, 2025 · By June Kinoshita, FSHD Society The 2025 International Research Congress (IRC) on Facioscapulohumeral Muscular Dystrophy (FSHD) convened June 12-13 in Amsterdam and online, gathering the world’s leading scientists, clinicians, and industry experts to share the latest advances in FSHD research and therapy development. Nov 13, 2020 · Update: Generating a 3D spatially patterned FSHD tissue construct for disease modeling and therapeutic strategies using suspended tissue open microfluidic patterning (STOMP) Nov 5, 2025 · Connecting our community through the latest FSHD information on research, newsmakers, and breakthroughs. Nov 13, 2022 · Many of you have heard us describe the FSHD Society as a “research-focused patient advocacy organization. Jan 31, 2017 · Cell Lines to be made available through the NIGMS Human Genetic Cell Repository, sponsored by the National Institute of General Medical Sciences at Coriell Institute for Medical Research (From PRWeb) The FSH Society, the Massachusetts-based non-profit and global leader in the quest to understand and treat facioscapulohumeral muscular dystrophy (FSHD), today announced the publication of an Jun 20, 2023 · Muscular Dystrophy UK Director of Research Innovation, Dr Kate Adcock, provides an update on her recent attendance at the FSHD Society’s 30th annual International Research Congress in Milan. Research and patients networks #FSHD #FacioScapuloHumeral FSHD News. Friends was started by the family and friends of Terry and Rick Colella, whose son has FSHD. Nov 26, 2024 · FSHD Society’s annual FSHD International Research Congress (IRC) is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. 26, 2025 — The FSHD Society, a leading nonprofit dedicated to advancing research and improving the lives of individuals with facioscapulohumeral muscular dystrophy (FSHD), […] Filed under: FSHD Society News, General, Media & PR Jun 5, 2025 · The data will be presented at the 32 nd Annual FSHD Society’s International Research Congress being held June 12-13, 2025, in Amsterdam. Sep 26, 2025 · Stay connected with the latest developments in FSHD research and community progress. Our mission at Beat FSHD is to provide comprehensive support, education, and the latest news to those affected by FSHD. May 25, 2025 · Accelerating Research Since 2004 The mission of Friends of FSH Research is to accelerate the discoveries that will lead to treatments or cures for FSHD. The meeting brought together 200 participants, patients, family members and caregivers, from 25 countries across Europe and beyond. And FSHD… Read More Aug 7, 2025 · Historic First: EPI-321 Becomes First Therapy to Target FSHD’s Root Cause A milestone moment for FSHD occurred on 6th August when Epicrispr Biotechnologies administered the first dose of EPI-321 to a patient in their groundbreaking clinical trial. For more information, please visit FSHD Global. Facioscapulohumeral muscular dystrophy (FSHD) is one of the most common types of muscular dystrophy affecting roughly 1 in 8,000 individuals. Established the first large animal model for FSHD, the FLExDUX4 minipig. Pioneered an epigenetic diagnostic for FSHD1 and 2. Our board, staff, volunteers, and world-class scientists are fully committed to transparent, reproducible, and transformative science Jun 23, 2025 · The BetterLife Research Gateway is a centralized portal for exploring and requesting data contributed directly by people living with FSHD. In a mouse model of severe FSHD, a single intravenous dose of DYNE-302 administered at the peak of muscle weakness restored ability to run on a treadmill. Explore our resources to stay informed, engage with groundbreaking studies, and contribute to a world without FSHD. And FSHD… Read More For Clinicians Advancing FSHD Research and Clinical Care Join the movement to improve outcomes for people with facioscapulohumeral muscular dystrophy (FSHD). Whether you're a clinician, researcher, genetic counselor, physical therapist, or other healthcare provider, the FSHD Society is your partner in driving evidence-based care and accelerating research. Discover active studies and study details for the Facioscapulohumeral Muscular Dystrophy Clinical Trial Research Network. SOLVE FSHD is a venture philanthropic organization founded on the generous commitment of $100M USD from the Wilson family. Jun 5, 2025 · FSHD is a rare, progressive, genetic disease caused by a mutation in the DUX4 gene, leading to skeletal muscle loss, muscle weakness and wasting. Remarks Committed funds or actual expenses Committed funds can differ from the actual expenses in a certain calendar year. Oct 23, 2024 · The Hirst Lab’s research could lead to better diagnostics and therapies in the future that target the root cause of FSHD, which have the potential to slow or stop muscle weakening and improving patients’ quality of life. FSHD NEWS over the world. Rieken A, Bossler AD, Mathews KD, Moore SA. These practice guidelines will deal with issues such as genetic testing, physical therapy, exercise, bracing, scapular surgery and potential retinal and respiratory complications The FSHD Advocate Magazine Published three times per year, the FSHD Advocate is the voice of our community, educating and empowering us all to take control of our FSHD journey and power the path towards a cure. As a mission-driven organization, our unique approach is to be a catalyst, making strategic investments through partners in leading academic, biotech Apr 1, 2025 · The world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD) . Jul 2, 2024 · Over the last decade, Statland has focused on preparing the research community for clinical trials for FSHD. This new portal allows qualified researchers, biotech companies, and other research organizations to access the de-identified data contributed through BetterLife, making it easier than ever to study FSHD in a real-world context. The conference brings together scientists and clinical experts from across the world to discuss FSHD research. The CTRN unites top-tier research centers from all over the world that perform groundbreaking clinical research and trials. Director of Research & Care, FSHD Society Since we launched BetterLife FSHD in August 2024, the innovative platform has provided people living with FSHD in the […] Filed under: FSHD Research, FSHD Society News Feb 4, 2025 · We look forward to working with the research community to interrogate this data and to add this wealth of data to our ongoing FSHD knowledge. Tawil led a committee of doctors who specialize in diagnosing and treating facioscapulohumeral muscular dystrophy (FSHD). Sep 8, 2025 · New research has demonstrated that a combined regimen of growth hormone and testosterone is safe, well-tolerated, and is associated with meaningful improvements in muscle mass, strength, and mobility for men living with facioscapulohumeral muscular dystrophy (FSHD). Below, we share information about important FSHD trials and studies, including some not on Feb 4, 2025 · We look forward to working with the research community to interrogate this data and to add this wealth of data to our ongoing FSHD knowledge. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts Aug 2, 2023 · New research carried out by MDUK-funded researchers has led to the discovery of a potential cause of facioscapulohumeral muscular dystrophy (FSHD). Food and Drug Administration (FDA) has cleared Facioscapulohumeral Dystrophy (FSHD) Optical Mapping for 4q35 deletion detection and 4qA/4qB haplotyping D4Z4 methylation testing SMCHD1 sequencing Iowa Publications CLIA laboratory genetic testing of facioscapulohumeral muscular dystrophy: a retrospective analysis. Mar 26, 2025 · March 26, 2025 Epicrispr Biotechnologies Secures $68 Million Series B to Initiate Clinical Trial for First-in-Class Disease-Modifying Epigenetic Neuromuscular Therapy for FSHD This year’s scientifi c program refl ects the extraordinary momentum across key domains of FSHD research. The FSHD Society drives global research efforts to accelerate breakthroughs in understanding, treating, and ultimately curing FSHD. 5 hours ago · The Global FSHD Innovation Hub is a wholly owned subsidiary of the FSHD Society, the world's leading research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD). The results showed no difference between placebo and active ingredient groups. This is your go-to resource for updates on research news, community stories, and FSHD Society initiatives. These overviews serve to estimate the closest representation of the actual expenses towards FSHD research in each calendar year, which is the reason that reporting . This simple saliva kit is sent directly to you at your home, which you can complete and return to the lab by post. Funded Research See All Research Calgary FSHD Clinical Innovation HUB Test period: One Year Investigator: Dr. Monthly webinars, tips for physical and mental health, plus the latest information and research updates. Aug 22, 2025 · Accelerating Research Since 2004 The mission of Friends of FSH Research is to accelerate the discoveries that will lead to treatments or cures for FSHD. FSHD 360 Regional Conferences bring you the latest in research, treatments, and daily disease management, all designed to help you take control of your health and future. He and his mentor, then at the University of Rochester Medical Center, established the FSHD Clinical Trial Research Network. We are part of a larger global FSHD community that has brought us to a place and time where cures for FSHD are possible. “This competition will bring together the brightest minds in medicine, technology, and science, all working Jun 14, 2025 · Avidity Biosciences advances del-brax for FSHD, initiating a pivotal Phase 3 study while exploring accelerated FDA approval pathways. With the recent advances in FSHD research and clinical advances, this conference has become catalytic in translating ideas into potential therapies. Presentations span the validation of clinical outcome measures in both pediatric and adult populations through the MOVE studies, integration of whole-body MRI with molecular biomarkers to map disease progression, and the emergence of platforms like BetterLife FSHD to elevate patient support medical and scientific organizations or individuals with activities and projects specifically demonstrating the importance of working as a network and in so doing encourage pharmaceutical companies to bring FSHD clinical trials to the UK fund specific research gaps in FSHD. The Society’s role is to provide support, management, and resources for Project Mercury. We are here to connect you to the latest scientific advancements, clinical trials, and opportunities to participate in shaping the future of FSHD care. This consolidation of expertise signals strong momentum toward bringing safe and effective treatments to people living with FSHD. For over a decade, Friends of FSH Research (Friends) has been In Pursuit of a Cure, supporting research studies that have contributed to our understanding of FSHD, offering the hope of treatment to the over 500,000 people living with the disease. FSHD Europe appreciates Avidity’s pioneering contributions in advancing FSHD research and values the Mar 14, 2025 · World’s first patients recruited into revolutionary gene study for rare muscle disorder 14 March 2025 Sheffield reseachers have recruited the world's first patients into a pioneering study that could switch off the progression of a rare, incurable muscle-weakening disorder called facioscapulohumeral muscular dystrophy (FSHD). Jul 30, 2025 · The 2025 International Research Congress on FSHD, held 12–13 June in Amsterdam and online, brought together more than 250 researchers, clinicians, industry Muscle Regeneration We are focused on slowing the progression of FSHD and improving quality of life through investment in muscle wellness and technologies. Jul 2, 2025 · The FSHD International Research Congress took place June 12–13 in Amsterdam and brought together a record-breaking 300 researchers and clinicians from around the world! Hosted by the FSHD FSHD Global Research Foundation also provides a free saliva research test, in partnership with the Peter and Takako Jones Lab in Reno, Nevada, USA. S. The FSHD Society’s Role in Project Mercury The FSHD Society and FSHD Canada Foundation are founding members of Project Mercury. Learn More Partners Global Task Force News & Updates UR Medicine / Neurology / National Registry for Myotonic Dystrophy & Facioscapulohumeral Dystrophy / Research Studies / 2017-2018 The FSHD Global Research Foundation Founded in 2008 and based in Australia, FSHD Global Research Foundation funds health and medical research on the causes, prevention, control, relief and cure for FSHD. ReDUX4 was designed to further assess the therapy’s safety and effectiveness as a treatment for FSHD. From mid-2023 FSHD Clinical Trials have started in the UK. Facioscapulohumeral Muscular Dystrophy (FSHD). 4. Jul 10, 2025 · By Ria de Haas, FSHD Europe FSHD Europe proudly hosted the first edition of FSHD Connect Europe, an event that marked a significant milestone for the European FSHD community. Director of Research & Care, FSHD Society Since we launched BetterLife FSHD in August 2024, the innovative platform has provided people living with FSHD in the […] Filed under: FSHD Research, FSHD Society News Update: Generating a 3D spatially patterned FSHD tissue construct for disease modeling and therapeutic strategies using suspended tissue open microfluidic patterning (STOMP) Jul 27, 2015 · Dr. There are now 21 academic medical centers in 10 countries in this network, and KU is the coordinating center. This research was led by Dr Yusuke Nishimura (pictured) in Professor Jatin Burniston’s lab at Liverpool John Moores University, working with Dr Yi-Wen Chen’s lab at the George Washington University in the US. To achieve our goal, we actively manage a portfolio of research that supports a pipeline for drug discovery. Feb 28, 2023 · Learn more about the current management, evolving treatment landscape, clinical trials, and MDA's work to further research for FSHD. gov. As the world’s largest research-focused FSHD patient organization, we connect patients, scientists, and advocates to accelerate progress and ensure that no one faces this disease alone. We encourage you to stay connected with the FSHD Society to power the path forward together. The REACH data reported small improvements in Reachable Workspace (RWS) not only in people taking the Empowering Clinicians and Advancing Research in FSHD The FSHD Society offers expert-driven education designed specifically for healthcare professionals, including physicians, physical therapists, genetic counselors, and researchers. Jan 31, 2024 · The JU receives support from the European Union’s Horizon Europe research and innovation programme, COCIR, EFPIA, EuropaBio, MedTech Europe, Vaccines Europe (and the FSHD Society and TREAT-NMD Services Ltd as contributing partners participating in the project) The project will also receive funding from UK Research and Innovation (UKRI) under Statland and his colleagues will share the latest news on FSHD research and clinical trials and best care practices. This event created a unique opportunity for patients, Jun 20, 2024 · In FORTITUDE, del-brax helped adults with FSHD grow stronger muscles and reach their arms farther than they could four months earlier. Individuals with FSHD carry a genetic mutation that allows the DUX4 gene to be sporadically activated in muscle cells, causing their gradual destruction throughout the body. Apr 18, 2022 · The recent news that Lululemon founder Chip Wilson is committing $100 million USD to targeted FSHD research over the next six years has been called ‘game-changing’,generating tremendous excitement and hope in our community. Our board, staff, volunteers, and world-class scientists are fully committed to transparent, reproducible, and transformative science FSHD research has used small model organisms — Drosophila melanogaster (fruit fly), Xenopus laevis (African clawed frog), Danio rerio (zebrafish) and Mus musculus (mouse) — to better understand FSHD pathogenic mechanisms, model disease, and perform preclinical testing of potential FSHD therapeutics. Please credit the FSHD Society as the source. Jun 14, 2025 · Our Managing Director, Emma Weatherley presented at the 32nd Annual International Research Congress in Amsterdam alongside renowned clinician, Nicol Voermans (FSHD Europe, Radboud University Medical Center) to outline our ambition to develop global clinical guidelines for Advance Care Planning and Palliative Care for FSHD along with our co organisers Dr Chris Turner and Prof Derek Willis Oct 7, 2022 · The drug, GYM329, aims to boost muscle growth Roche, the Swiss pharmaceutical giant, has announced that it is launching an international Phase 2 clinical trial for facioscapulohumeral muscular dystrophy (FSHD). IND clearance follows the recent approval of CTA for EPI-321 in facioscapulohumeral muscular dystrophy (FSHD) in New Zealand – Global Phase 1/2 clinical trial expected to commence in 2025 SOUTH SAN FRANCISCO, CA – Epicrispr Biotechnologies, a biotechnology company focused on developing curative therapies, today announced that the U. Our board, staff, volunteers, and world-class scientists are fully committed to transparent, reproducible, and transformative science that will inspire hope for people with FSHD. Whilst a disease-modifying treatment for Facioscapulohumeral muscular dystrophy (FSHD) does not exist currently, recent advances in complex molecular pathophysiology studies of FSHD have led to possible therapeutic approaches for its targeted SOLVE FSHD is a venture philanthropic organization founded on the generous commitment of $100M USD from the Wilson family. Along with the excitement, patients have many questions about the role of Wilson’s mission-driven organization, SOLVE FSHD. Virtual registration open until June 9th The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. By staying informed and engaged, you’re helping us raise awareness, support individuals and News & Media Stay informed and connected with the latest developments in the FSHD community. The research we fund spans from fundamental lab research to understand the mechanisms of this disease, right through to translational research to turn exciting Jul 3, 2024 · Facioscapulohumeral Muscular Dystrophy (FSHD) is a genetic muscle disorder that affects the skeletal muscles. We collaborate with the world’s best scientists and clinicians to build our knowledge of this disease, find new opportunities for treatments, and give life back to muscles. About the FSHD Clinical Trial Research Network Launched in 2016 with FSHD Society funding, the FSHD Clinical Trial Research Network (CTRN) is central to accelerating treatment development. Sep 17, 2024 · Losmapimod, an investigational medication from Fulcrum Therapeutics, failed to significantly outperform a placebo at improving upper limb function and other clinical measures in people with facioscapulohumeral muscular dystrophy (FSHD), according to top-line data from the REACH Phase 3 trial FSHD Global Research Foundation is Australia’s Peak Body for Facioscapulohumeral Dystrophy (FSHD), operating globally with the world’s leading researchers, biotech’s, and communities to find a cure for FSHD, and improve muscle regeneration, function and wellness. Clinical trials are a type of clinical study that tests if a treatment works and is safe. Fulcrum’s decision was based on analysis of data from the Phase 3 REACH trial. Apr 3, 2025 · – U. CTRN doctors and clinics also provide specialized care for FSHD and other The FSHD CTRN is a consortium of academic research centers with expertise in FSHD clinical research or in conducting neuromuscular clinical trials. Advancing Global FSHD Research Together For more than 30 years, the FSHD Society’s International Research Congress (IRC) on facioscapulohumeral muscular dystrophy (FSHD) has served as the premier global meeting dedicated exclusively to FSHD research. The mission of the UMass Chan Wellstone Center is to conduct research to reveal the underlying genetic and epigenetic mechanisms driving the muscle pathology of FSHD, leading to the development of novel therapeutics for this devastating disease. The project will analyze a broad range of approved and late-stage Jul 22, 2025 · At the FSHD Society’s International Research Congress (IRC) on June 13 in Amsterdam, I introduced the BetterLife FSHD Research Gateway. Get exclusive insights from upcoming presentations. Therefore, […] Filed under: FSHD Research, FSHD Society News, General, Living with FSHD Read More FSHD News. Explore our resources to find valuable information on managing FSHD, connect with others in the community, and stay updated with the latest research and developments. Peter and Takako Jones, whose sole focus is facioscapulohumeral muscular dystrophy, other scientific contributors, and ambassadors across the globe who battle the disease, aim to help the worldwide FSHD patient community find answers about their FSHD status through education, advocacy and saliva Mar 27, 2025 · Epicrispr has raised $68m in the initial close of its Series B financing round to commence the clinical trial of EPI-321 for FSHD. With more than 500 participants currently enrolled, the The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. Your hub for living well with FSHD. A note to our families This morning, Fulcrum released top-line results of its phase 3 trial for Losmapimod. This represents the world’s first investigational therapy designed to silence DUX4 expression through epigenetic modulation, targeting the root Dec 10, 2024 · The venture philanthropy organization SOLVE FSHD is offering $10 million in prizes for innovators who are working to develop new treatments for facioscapulohumeral muscular dystrophy (FSHD). Nov 11, 2025 · No Time to Wait By Erin Saxon, FSHD Society Those living with FSHD face a harsh reality: this is a relentlessly progressive disease with no treatments to slow or stop […] Filed under: FSHD Research, FSHD Society News Apr 18, 2022 · The recent news that Lululemon founder Chip Wilson is committing $100 million USD to targeted FSHD research over the next six years has been called ‘game-changing’,generating tremendous excitement and hope in our community. Jun 11, 2025 · Such forward-looking statements include, but are not limited to, statements regarding: Avidity's plans to present topline data from the dose escalation cohorts of the Phase 1/2 FORTITUDE™ trial Nov 12, 2012 · Friends of FSHD Research has helped fund another ground breaking project that has shed new light on the mechanism of muscle damage in Facioscapulohumeral Muscular Dystrophy, and suggests new targets for treatment. The Center has driven groundbreaking discoveries in FSHD, established care and genetic testing standards, and expanded the FSHD Clinical Trial Research Network to 28 global sites, facilitating research participation and advancing potential therapies. bhzaphpqlsccvtactoyxlzmehcuicgunzdamttmmktzirjaykjvlortbnmjmozgnnuxagdbnoqhlji