# guest voice (blogs) — RSS Amplifier Recent posts from the 2 feeds in the RSS Amplifier directory that cover guest voice. Page: Feed: --- ## [Rarely Speaking: Living Well with MD – Confirmation](https://musculardystrophynews.com/rarely-speaking-living-well-with-md-confirmation/) _2026-08-21 · Noura Costany · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ The post Rarely Speaking: Living Well with MD – Confirmation appeared first on Muscular Dystrophy News . ## [A busy week ends with a baby shower, a stomach bug, and a lesson learned](https://musculardystrophynews.com/columns/busy-week-ends-baby-shower-stomach-bug-lesson-learned/) _2026-08-21 · Betty Vertin · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ The week before school started was pure chaos. We had only been home from vacation long enough to unpack and start the laundry before we had to go to open houses on Monday at two of the kids’ schools, and then close on our new house. If that weren’t hectic enough, before the week was \[…\] The post A busy week ends with a baby shower, a stomach bug, and a lesson learned appeared first on Muscular… ## [Sickle cell pain crisis: A caregiver’s guide to home management](https://sicklecellanemianews.com/sickle-cell-crisis-home-management/) _2026-08-21 · Oluwatosin Adesoye · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ The first signs of a sickle cell disease pain crisis can spark instant panic. But not every pain crisis requires rushing to the emergency room. Some mild to moderate sickle cell pain episodes can be safely managed at home if the person is old enough to communicate their symptoms, their pain responds to prescribed home \[…\] The post Sickle cell pain crisis: A caregiver’s guide to home management… ## [Biotech raises $90M for late-stage testing of FSHD treatment](https://musculardystrophynews.com/news/biotech-raises-90m-late-stage-testing-fshd-treatment/) _2026-08-20 · Marisa Horak, MS · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ Epicrispr Biotechnologies has raised $90 million in financing to support late-stage clinical testing of EPI-321, the company’s epigenetic treatment candidate for facioscapulohumeral muscular dystrophy (FSHD). “This financing marks a pivotal milestone for Epicrispr as we advance EPI-321 and the next generation of programmable epigenetic medicines,” Amber Salzman, PhD, CEO of Epicrispr, said in a… ## [Safety is a key component of accessibility in public transportation](https://musculardystrophynews.com/columns/safety-key-component-accessibility-public-transportation/) _2026-08-19 · Shalom Lim · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ Last year, our family’s wheelchair-accessible van broke down due to a fault in its hydraulic ramp. From March to May 2025, my caregiver and I had no choice but to take the bus to my office. It was the first time I’d used public transportation in a decade. Back then, I didn’t need a ventilator \[…\] The post Safety is a key component of accessibility in public transportation appeared first on… ## [Delayed puberty and other sickle cell challenges that aren’t widely discussed](https://sicklecellanemianews.com/columns/delayed-puberty-sickle-cell-challenges-widely-discussed/) _2026-08-19 · Oluwatosin Adesoye · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ Previously, I’d never publicly shared my experiences with delayed puberty and how deeply it affected me. Looking back, I realize that it was an important part of my journey with sickle cell disease (SCD). I hope my story will help young warriors and caregivers understand this often-overlooked complication and remind them that they are not \[…\] The post Delayed puberty and other sickle cell… ## [Rarely Speaking: Living Well with MD: Real-World Hacks & Daily Realities](https://musculardystrophynews.com/rarely-speaking-living-well-with-md-real-world-hacks-daily-realities/) _2026-08-18 · Noura Costany · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ The post Rarely Speaking: Living Well with MD: Real-World Hacks & Daily Realities appeared first on Muscular Dystrophy News . ## [Parent Project Muscular Dystrophy](https://musculardystrophynews.com/advocacy-partners/parent-project-muscular-dystrophy/) _2026-08-18 · Bionews Staff · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ Parent Project Muscular Dystrophy fights every single battle necessary to end Duchenne and Becker. We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge therapies, and a community of support. We invest deeply in therapeutic options for this generation of Duchenne and Becker patients and in research that will benefit future generations. Our… ## [Review highlights non-opioid options for sickle cell pain management](https://sicklecellanemianews.com/news/review-highlights-non-opioids-sickle-cell-pain-management/) _2026-08-18 · Steve Bryson, PhD · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ Common pain relievers, such as nonsteroidal anti-inflammatory drugs (NSAIDs) or acetaminophen, combined with standard opioid care, may provide meaningful relief for acute pain in people with sickle cell disease (SCD), according to a review study. Cognitive behavioral therapy, a type of talk therapy, also showed signs of efficacy against chronic SCD pain, while other treatments, \[…\] The post Review… ## [FDA OKs expansion of DMD stem cell trial, allows 30 more boys](https://musculardystrophynews.com/news/fda-oks-expansion-dmd-stem-cell-trial-allows-30-boys/) _2026-08-18 · Andrea Lobo · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ The U.S. Food and Drug Administration (FDA) has allowed the enrollment of up to 30 additional boys with Duchenne muscular dystrophy (DMD) in a clinical study testing an experimental stem cell therapy. The Phase 2 trial (NCT06579352) testing the treatment from Signature Biologics has enrolled five boys, ages 5 to 10, at two sites in \[…\] The post FDA OKs expansion of DMD stem cell trial, allows 30… ## [PixelRift — Platforming with Level Editor (Sponsored)](https://crawlproof.com/a/laS3Z0LGmYdX) _2026-08-18 · **Sponsored**_ Includes a built-in level editor, campaign with elemental heroes, and boss encounters. ## [Learning to keep moving forward, even when I lack motivation](https://sicklecellanemianews.com/columns/learning-keep-moving-forward-lack-motivation/) _2026-08-17 · Dunstan Nicol-Wilson · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ Recently, I’ve been struggling with a departure from my normal routine. I’ve written about how exercise and good nutrition have helped me manage my sickle cell disease, but I’ve been traveling a lot and have found myself thrown off balance in ways I didn’t anticipate. At first, I blamed it on the time difference. I \[…\] The post Learning to keep moving forward, even when I lack motivation appeared… ## [Growing up with sickle cell disease: What my parents did right](https://sicklecellanemianews.com/growing-up-what-my-parents-did-right/) _2026-08-17 · Mary Shaniqua · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ So, your child has been diagnosed with sickle cell disease. What now? Grieve, but don’t let it paralyze you. The greatest risk isn’t the grief itself, but how it can freeze parents in fear, denial, or helplessness. Because raising a child with sickle cell, however unfair, means you need to step up as a parent who \[…\] The post Growing up with sickle cell disease: What my parents did right appeared… ## [Coping with sickle cell caregiver burnout: Resources and support](https://sicklecellanemianews.com/sickle-cell-caregiver-burnout/) _2026-08-17 · Oluwatosin Adesoye · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ Note: Oluwatosin Adesoye is a practicing physician living with sickle cell disease and is a columnist for Sickle Cell Disease News. Caring for someone with sickle cell disease is an act of love that often happens quietly in emergency rooms and hospital wards, and during sleepless nights at home. Caregivers become advocates, medication reminders, chauffeurs, \[…\] The post Coping with sickle cell… ## [Moving from pediatric to adult sickle cell care: How to navigate the transition](https://sicklecellanemianews.com/pediatric-to-adult-sickle-cell-transition/) _2026-08-17 · Mary Shaniqua · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ Note: Mary Shaniqua lives with sickle cell disease and is a columnist for Sickle Cell Disease News. Growing up, I had excellent pediatric hematology care. It was consistent, I had a trusted specialist nurse, frequent appointments and testing, and so on. Everything changed when I transitioned to the adult clinic. Before I could even adjust, \[…\] The post Moving from pediatric to adult sickle cell… ## [How caregivers can advocate for their loved one at a sickle cell appointment](https://sicklecellanemianews.com/sickle-cell-appointment-advocacy/) _2026-08-17 · Dunstan Nicol-Wilson · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ Note: Dunstan Nicol-Wilson lives with sickle cell disease and is a columnist for Sickle Cell Disease News. A hematology appointment may last only 20 or 30 minutes, but the decisions made during that time can shape the months that follow. As a caregiver, your preparation and observations can help ensure those decisions reflect everyday life. \[…\] The post How caregivers can advocate for their loved… ## [Guest Voice: How we care for the people who survive sickle cell disease](https://sicklecellanemianews.com/guest-voices/guest-voice-how-we-care-people-survive-sickle-cell-disease/) _2026-08-14 · Wunmi Bakare · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ When I received a stem cell transplant in 2019, I was given something I had dreamed about for more than three decades: the chance to live without sickle cell disease. My brother was my donor, and because he was a perfect match, the transplant process was a success. For the first time in my life, \[…\] The post Guest Voice: How we care for the people who survive sickle cell disease appeared first on… ## [A vacation with close friends was a perfect way to end the summer](https://musculardystrophynews.com/columns/vacation-close-friends-perfect-way-end-summer/) _2026-08-14 · Betty Vertin · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ My family recently spent a week in Indiana with friends at a cabin on a lake, and it was so good for us. Our two families met more than a decade ago when our sons were all little boys, and we have remained friends throughout our separate journeys with Duchenne muscular dystrophy (DMD). My husband \[…\] The post A vacation with close friends was a perfect way to end the summer appeared first on… ## [The cost of connecting with others in the sickle cell community](https://sicklecellanemianews.com/columns/cost-connecting-others-sickle-cell-community/) _2026-08-13 · Shamonica Wiggins-Mayes · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ “We lost a gentle soul yesterday. Rest warrior Daryl Rosborough.” Reading that sentence as I checked my Facebook first thing in the morning felt like a ton of bricks crashing down on me. Daryl was more than a friend; he was like an older brother to me. Sadly, he passed away on July 13, just \[…\] The post The cost of connecting with others in the sickle cell community appeared first on Sickle Cell… ## [US developer gearing up for first-in-human trial of Duchenne cell therapy](https://musculardystrophynews.com/news/developer-plans-seek-fda-clearance-first-human-trial-dmd-treatment/) _2026-08-13 · Marisa Horak, MS · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ A U.S. biopharmaceutical company is gearing up to launch its first clinical trial of a novel cell therapy designed to restore lost muscle cells in people with Duchenne muscular dystrophy (DMD). Texas-based IPS Heart announced that it is preparing an investigational new drug application or IND — a formal request to the U.S. Food and Drug \[…\] The post US developer gearing up for first-in-human trial… ## [Beware of online sickle cell disease ‘advocacy’ that aims to trick you](https://sicklecellanemianews.com/columns/beware-online-sickle-cell-disease-advocacy-aims-trick-you/) _2026-08-12 · Oluwatosin Adesoye · Sickle Cell Disease News – The Web's Daily Resource for Sickle Cell Disease News_ Can people who don’t have sickle cell disease (SCD) advocate for the community? Absolutely. However, I think there is an important distinction that deserves attention. Usually, most advocates are patients, caregivers, healthcare professionals, or family members of people living with the disease. However, I’ve recently seen an influx of people joining online support groups and \[…\] The post Beware… ## [Stay updated on your professional world (Sponsored)](https://crawlproof.com/a/Q57b7QeXLn5I) _2026-08-12 · **Sponsored**_ Keep in touch with people you know, build your career. ## [New issues arise while seeking answers to my progressing symptoms](https://musculardystrophynews.com/columns/new-issues-arise-seeking-answers-progressing-symptoms/) _2026-08-12 · Robin Stemple · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ My regular readers know I’ve been losing function in my right arm, making many activities of daily living challenging. The pain, weakness, and stiffness I experience when I try to do anything with that arm began suddenly and has progressed rapidly this year. I’m now experiencing similar symptoms in my left arm. Given that rapid \[…\] The post New issues arise while seeking answers to my progressing… ## [Leaky muscle fibers may help drive damage in muscular dystrophy](https://musculardystrophynews.com/news/leaky-muscle-fibers-help-drive-damage-muscular-dystrophy/) _2026-08-11 · Patricia Inácio, PhD · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ When muscle fibers fail to properly seal tiny tears in their membrane, as occurs in some forms of muscular dystrophy, the resulting leakage can change the surrounding environment and attract immune cells that contribute to further muscle damage, a mouse study suggests. The findings suggest that the tissue surrounding muscle fibers may play an active \[…\] The post Leaky muscle fibers may help drive… ## [I help people through a neuromuscular diagnosis and whatever comes next](https://musculardystrophynews.com/guest-voice/neuromuscular-disease-support/) _2026-08-11 · Brooke Smith · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ “I don’t even know what question to ask.” I’ve heard some version of that sentence hundreds of times. Sometimes it’s from a parent whose child was just diagnosed with Duchenne muscular dystrophy. Sometimes it’s a husband whose wife has been diagnosed with ALS. Other times it’s someone living with spinal muscular atrophy, Charcot-Marie-Tooth disease, limb-girdle \[…\] The post I help people through a… ## [How my attitude toward health checkups has changed over the years](https://musculardystrophynews.com/columns/how-attitude-health-checkups-changed-over-years/) _2026-08-10 · Patrick Moeschen · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ Shortly after being diagnosed with muscular dystrophy in 1985, I returned to the hospital for a checkup and to review my treatment plan. I thought the doctors might tell me to eat an apple, take some aspirin, and rest up. I was 12 years old, so what did I know? In my mind, I’d go \[…\] The post How my attitude toward health checkups has changed over the years appeared first on Muscular Dystrophy… ## [Expanded access program to bring DMD treatment to patients in 1 US state](https://musculardystrophynews.com/news/expanded-access-program-bringing-duchene-therapy-patients-us-state/) _2026-08-06 · Marisa Horak, MS · Muscular Dystrophy News – The Web's Daily Resource for Muscular Dystrophy News_ The University of Alabama at Birmingham (UAB) has launched an expanded access program to make the experimental exon-skipping therapy delpacibart zotadirsen (del-zota) available to qualifying patients with Duchenne muscular dystrophy (DMD). Del-zota, which is being developed by Avidity Biosciences, is specifically designed to treat DMD in people with disease-causing mutations that are amenable to…