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Steve Chrzanowski

@stevechrz.bsky.social
21 followers 16 following 42 posts

Assistant Professor at UMassChan’s Duchenne Program via UofCincy → UFMedicine → TheBCRP → BCHNeuroRes → @arvardneuromds • Messages my own • Messages ≠endorsement

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Steve Chrzanowski @stevechrz.bsky.social · 23/09/2026
Really proud of this crew and everything they do for our Duchenne patients and families every week. Couldn’t ask for a better team @umasschan.bsky.social And thanks to Fritz & Friends for the reminder — strength is more than muscle. 💪 #Duchenne #DMD
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Steve Chrzanowski @stevechrz.bsky.social · 01/07/2026
The @umasschan.bsky.social Duchenne clinic today: 🩺 World-class patient care 🌍 World-class international representation ⚽ World-class trash talk
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Steve Chrzanowski @stevechrz.bsky.social · 05/06/2026
Today, #NewbornScreening for #DMD is officially activated in #Massachusetts, making us just the third state in the nation to screen every newborn for DMD. Thank you to @massgovernor.bsky.social , #ParentProjectMD, #MDA, and @cureduchenne.bsky.social for supporting the work that brought us here.
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Steve Chrzanowski @stevechrz.bsky.social · 07/05/2026
Warm weather, growing families, graduations, and new adventures ahead. Proud of the @umasschan.bsky.social Duchenne Program team as people head to graduate school, medicine, and parenthood. Grateful for this group.
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Steve Chrzanowski @stevechrz.bsky.social · 24/04/2026
40 states and 19 countries. The Duchenne Program @umasschan.bsky.social continues to grow, but what matters most are the individual stories behind each pin. Grateful to be part of every unique journey.
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Steve Chrzanowski @stevechrz.bsky.social · 14/04/2026
Appreciative of the opportunity to present at AMCP 2026 on aligning managed care policy with the urgency of treatment in Duchenne muscular dystrophy. Timely access remains a critical determinant of outcomes.
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Steve Chrzanowski @stevechrz.bsky.social · 10/04/2026
For many individuals with #Duchenne, Jett Foundation's Camp Promise is the 1 week a year where everything is accessible. You can help make that happen. Volunteer: Join Camp Promise Team Camper info: Attend Camp Promise www.jettfoundation.org/camp-promise... www.jettfoundation.org/camp-promise...
jettfoundation.org
Campers - Jett Foundation
Each year, campers and volunteers from all over the country join us at our many locations. Will you be the next member of the Camp Promise family? Join Us Who We Serve As a program of Jett Foundation, Camp Promise helps Jett Foundation meet its mission by providing a barrier-free, overnight camp for kids, teens, […]
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Steve Chrzanowski @stevechrz.bsky.social · 12/03/2026
Proud to see this work from Dr. Pesco reviewing the expanding therapeutic landscape in DMD. Important synthesis of dystrophin restoration and emerging disease-modifying strategies as the field rapidly evolves. www.mdpi.com/2813-0413/5/... #DMD #Duchenne #Neuromuscular #RareDisease
mdpi.com
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Steve Chrzanowski @stevechrz.bsky.social · 10/03/2026
Super proud of two of our fantastic medical students Audrey and Danielle, investigating perceived discrepancies parent/patient psychiatric health in DMD and females with dystrophinopathies cardiac manifestations at the 2026 MDA meeting.
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Reposted by Steve Chrzanowski
UMass Chan Medical School @umasschan.bsky.social · 11/02/2026
The Boston Globe surveyed researchers in Massachusetts who receive NIH funding and heard from 370, including Rachael Sirianni, PhD, a pediatric brain cancer researcher at UMass Chan: direc.to/oUwc “I’m holding my breath,” Dr. Sirianni said. #NIHFunding @docsirianni.bsky.social @bostonglobe.com
direc.to
Boston built a global biotech empire. Now the talent is quietly drifting away. - The Boston Globe
In a first-of-its-kind survey, the Globe asked hundreds of scientists about the impact of federal funding cuts.
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Steve Chrzanowski @stevechrz.bsky.social · 12/02/2026
Valentine’s Day is officially made. We have the most wonderful, grateful, and loving, patients, and families. (it is supposed to be addressed to “Steve Doctor”)#PedsNeuro
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Steve Chrzanowski @stevechrz.bsky.social · 21/01/2026
Read this inspiring story about my sister, Gracie, a photographer based in Colorado who captures the energy of DJs, live music, and authentic human connection through her lens. Her art blends nature, passion, and emotion with every shot. Read her story: voyagedenver.com/interview/me...
voyagedenver.com
Meet Grace McHugh of Parker, CO
Today we’d like to introduce you to Grace McHugh. Hi Grace, can you start by introducing yourself? We’d love to learn more about how you got to where you are today?I am not trained in photography and developed the skills I have through practice and in the job training. I am actually an engineer (Chemical […]
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Steve Chrzanowski @stevechrz.bsky.social · 16/01/2026
With Duchenne muscular dystrophy now added to the US newborn screening RUSP, families and clinicians need clarity when CK is high at birth. Our study helps explain why some newborns have elevated CK and how to better interpret screening results. pubmed.ncbi.nlm.nih.gov/41498380/
pubmed.ncbi.nlm.nih.gov
Interpreting Neonatal hyperCKemia Identified Through Duchenne Muscular Dystrophy Newborn Screening: A Predictive Model Based on Maternal, Labor, Delivery and Newborn Factors - PubMed
Elevated CK levels may be used for DMD-NBS. Multiple perinatal factors are associated with transient non-DMD hyperCKemia. Our model considers the potential combined impact of such factors and generates a non-disease likelihood for preliminary hyperCKemia interpretation.
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Steve Chrzanowski @stevechrz.bsky.social · 29/12/2025
Per tradition, here are my top five books from 2025, for anyone looking for good reads in 2026. - A Fine Balance - Sudha Bhuchar - Demon Copperhead - Barbara Kingsolver - Columbus Day - Craig Alanson - Everything is Tuberculosis - John Green - Abundance - Ezra Klein
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Steve Chrzanowski @stevechrz.bsky.social · 08/12/2025
Energized by the work happening today. Grateful to partner with Save Our Sons as we build global recommendations for adult Duchenne care. The commitment and collaboration in this community inspire real progress. 💙🌍
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Steve Chrzanowski @stevechrz.bsky.social · 15/11/2025
Grateful for the privilege to join our @umasschan.bsky.social team at today’s @cureduchenne.bsky.social meeting. Inspiring conversations, motivated families, and a community deeply committed to improving the lives of everyone affected by Duchenne. Honored to be part of this work.
CureDuchenne 2025
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Steve Chrzanowski @stevechrz.bsky.social · 03/11/2025
Happy (belated) halloween from the @umasschan.bsky.social Duchenne Program!
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Steve Chrzanowski @stevechrz.bsky.social · 24/10/2025
Duchenne affects more than muscles—it impacts learning, mood, and behavior too. Prioritizing mental health is essential to whole-person care. 💙 #Duchenne #PPMD #MentalHealth
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Steve Chrzanowski @stevechrz.bsky.social · 14/10/2025
What an incredible week at the @worldmusclesociety.org meeting in beautiful Vienna! Grateful to the hosts for such a thoughtfully organized and inspiring conference. Excited to rekindle old collaborations and spark new ones—science and friendship at their best. 🇦🇹💪🧠
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Steve Chrzanowski @stevechrz.bsky.social · 08/10/2025
Behind every scientist and clinician is a family that makes it possible. Thank you @worldmusclesociety.org for valuing wellbeing and creating space for families at #WMS2025
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Steve Chrzanowski @stevechrz.bsky.social · 03/10/2025
Grateful to @repmcgovern.bsky.social for his acknowledgment and advocacy for science at @umasschan.bsky.social. Science is the future for kids — their health, their opportunities, their lives. 🔬👦👧 #ScienceNotSilence #FundOurFuture
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Steve Chrzanowski @stevechrz.bsky.social · 16/09/2025
We’re excited to be hiring a Research Physical Therapist in our program @umasschan.bsky.social ! This role supports people with neuromuscular disorders, blending hands-on care, research trials, and interdisciplinary teamwork. Apply here: www.ummsjobs.com/job/11149/
ummsjobs.com
UMass Chan Medical School | ITM
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Steve Chrzanowski @stevechrz.bsky.social · 14/09/2025
Grateful to have been part of a successful #cTAP workshop! The energy, collaboration, and insights from colleagues across academia, industry, and advocacy were inspiring. Excited to see how this momentum accelerates progress for the #Duchenne community. 💪 #DMD
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Steve Chrzanowski @stevechrz.bsky.social · 04/09/2025
As a @ufmedicine.bsky.social grad, I stand with Florida families: vaccines save lives and protect kids. Preventable diseases like Hib, pneumococcus, and meningitis shouldn’t return. I support vaccines and am glad to answer any questions about safety and efficacy #VaccinesWork #ProtectKids
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Steve Chrzanowski @stevechrz.bsky.social · 18/07/2025
FDA has asked Sarepta to halt all Elevidys gene therapy shipments due to safety issues. It opened the door to rival DMD gene therapy trials, but did we move too fast? As doctors, our first duty is to do no harm, especially to children. www.reuters.com/business/hea...
reuters.com
Exclusive: US FDA to request Sarepta to stop all shipments of gene therapy Elevidys, source says
The U.S. Food and Drug Administration will request Sarepta Therapeutics to voluntarily stop all shipments of its gene therapy, Elevidys, a source familiar with the matter told Reuters on Friday.
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Steve Chrzanowski @stevechrz.bsky.social · 11/07/2025
As a physician-scientist leading DMD research at @umasschan.bsky.social, this freeze hits home. Hirings are halted, trials are delayed, and work is slowed for our patients and families that depend on us. My team, and our patients, deserve better. #FundScience #DMD www.wbur.org/news/2025/07...
wbur.org
UMass Chan Medical School faces shortfall of tens of millions of dollars in NIH funding
The medical school's chancellor, Dr. Michael Collins, said nearly $42 million in grants expected by the institution's scientists for research and related expenses did not come through for the fiscal y...
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Steve Chrzanowski @stevechrz.bsky.social · 06/07/2025
Medicaid is under attack. Cuts like these threaten care for millions of families, children, and people with disabilities. My latest in Pediatric Neurology explains why Medicaid is essential and must be protected: www.sciencedirect.com/science/arti...
sciencedirect.com
The Essential Role of Medicaid in Duchenne Muscular Dystrophy Care: A Call to Protect Vulnerable Populations
Duchenne muscular dystrophy (DMD) is the most common fatal pediatric neuromuscular disorder, resulting in premature morbidity and mortality. Multidisc…
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Steve Chrzanowski @stevechrz.bsky.social · 04/06/2025
Our new piece in @pedneurojournal.bsky.social calls out the current administration’s efforts to weaken Medicaid. This move will harm kids with medical complexities, including those with #DMD. We must protect vulnerable lives. #SaveMedicaid sciencedirect.com/science/arti...
sciencedirect.com
The Essential Role of Medicaid in Duchenne Muscular Dystrophy Care: A Call to Protect Vulnerable Populations
Duchenne muscular dystrophy (DMD) is the most common fatal pediatric neuromuscular disorder, resulting in premature morbidity and mortality. Multidisc…
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Steve Chrzanowski @stevechrz.bsky.social · 25/05/2025
Had a great time at my first @cureduchenne.bsky.social Futures meeting. I especially enjoyed our panels about transitioning to adulthood, and addressing some of the oft-neglected mental health components of DMD.
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Steve Chrzanowski @stevechrz.bsky.social · 22/05/2025
Fantastic work from @umasschan.bsky.social Neurology at the Annual Research Celebration.
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Steve Chrzanowski @stevechrz.bsky.social · 13/05/2025
Love the @umasschan.bsky.social #Duchenne Program team. Grateful to work with such amazing and dedicated people.
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Steve Chrzanowski @stevechrz.bsky.social · 06/05/2025
One of the most thoughtful and sharp-witted voices I know just launched a blog sharing life, wheels, and wisdom from his perspective. Highly recommend checking it out! www.charleyseckler.com/wheelingandd... #DisabilityAwareness #Accessibility #PatientVoice
charleyseckler.com
The Wheel Deal | Charley Seckler Blog | Join The Adventure! — Charley Seckler
Discover Charley Seckler's journey with humor and honesty on The Wheel Deal blog. Dive into life's chaos with a laugh and a fresh perspective.
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Steve Chrzanowski @stevechrz.bsky.social · 18/04/2025
Cutting the newborn screening committee is a mistake and hurts kids with Duchenne. Without it, adding DMD to state screens could stall—delaying diagnosis and early care when it matters most. This move puts vulnerable babies at risk. 🔗 www.nbcnews.com/health/healt...
nbcnews.com
HHS eliminates advisory committee on newborn screening ahead of vote on rare disorders
The committee’s central role was to recommend which conditions should be included on a universal screening panel for infants.
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Steve Chrzanowski @stevechrz.bsky.social · 15/04/2025
Very excited for my dear friend and colleague Ron to be joining Dyne! A great hire wirth a bright future and promise ahead in the #DMD and #DM1 worlds. www.globenewswire.com/news-release...
globenewswire.com
Dyne Therapeutics Announces Chief Business Officer and Chief Scientific Officer Appointments
- Vikram Ranade, PhD, appointed as chief business officer - - Ranjan Batra, PhD, appointed as chief scientific officer - - Oxana Beskrovnaya, PhD,...
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Steve Chrzanowski @stevechrz.bsky.social · 08/03/2025
I am grateful to my mentors for guiding me through my first chapter: General Evaluation of Strength, Tone, and Sensation in Rudolph’s Pediatrics. Excited to contribute to this invaluable resource! 👶🧠💪🔍 accesspediatrics.mhmedical.com/content.aspx...
accesspediatrics.mhmedical.com
General Evaluation of Strength, Tone, and Sensation
Read chapter 560 of Rudolph's Pediatrics, 24<sup>th</sup> Edition online now, exclusively on AccessPediatrics. AccessPediatrics is a subscription-based resource from McGraw Hill that features trusted ...
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Reposted by Steve Chrzanowski
UMass Chan Medical School @umasschan.bsky.social · 21/02/2025
UMass Chan researchers, community partners, biotech businesses and families directly impacted by NIH-funded research joined U.S. Rep. James P. McGovern for a roundtable Thursday on proposed cuts to NIH funding and Medicaid: direc.to/mP68 #NIH #ResearchFunding
From left, Guangping Gao, Terence Flotte, James McGovern, and Katherine Luzuriaga at the start of the roundtable discussionLee, Lori and Noa GreenwoodJoel Richter, PhD, the Arthur F. Koskinas Chair in Neuroscience and professor of molecular medicineAmy Brown and Brian Brown
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Steve Chrzanowski @stevechrz.bsky.social · 21/02/2025
What an incredible privilege to work with incredible patients, families, providers, scientists, and community partners. #ChildrensLivesMatter
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Steve Chrzanowski @stevechrz.bsky.social · 30/01/2025
I wrote this in 2017 as a graduate student. Now as junior faculty, it is so frustrating how it again rings true today. www.gainesville.com/story/opinio...
gainesville.com
NIH cuts are danger to science
Recently, President Donald Trump proposed to cut the National Institutes of Health’s budget by approximately 20 percent in his first budget proposal. It is impossible to succinctly state the successe…
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Steve Chrzanowski @stevechrz.bsky.social · 21/12/2024
Per tradition, here are my top five books from 2024, for anyone looking for good reads in 2025. With finishing fellowship and starting a new job, my list seems shorter, but I still found some enjoyable books.
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Steve Chrzanowski @stevechrz.bsky.social · 21/12/2024
Happy holidays from the @umasschan.bsky.social Duchenne Program team. Sending love, joy, and cheer from our family to yours.
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Steve Chrzanowski @stevechrz.bsky.social · 10/12/2024
Here's an interesting case from fellowship highlighting some advanced MR imaging and reconstruction techinques and histologic findings of a Perineuroma that caused footdrop.
neurology.org
Perineuroma Caused Isolated Footdrop | Neurology
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Steve Chrzanowski @stevechrz.bsky.social · 05/12/2024
Thank you to @umasschan.bsky.social’s Neurology Department for the opportunity to give Grand Rounds at on the Biography of Duchenne muscular dystrophy this week.
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Steve Chrzanowski @stevechrz.bsky.social · 19/11/2024
“There has been a remarkable transition from qualitative MRI presented in case reports to quantitative MRI becoming an essential trial outcome across multiple populations, reflecting ImagingNMD’s pioneering role in establishing MRI as a crucial tool for clinical trials in muscular dystrophies.
imagingnmd.org
ImagingNMD Makes Strong Showing at World Muscle Society 2024 - iNMD
The World Muscle Society (WMS) Congress 2024, held in Prague from October 8-12, marked another significant milestone for ImagingNMD's contributions to neuromuscular disease research. Our team presente...
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Steve Chrzanowski @stevechrz.bsky.social · 14/11/2024
Humbled to be receive the Taeun Chang post-graduate award and speak on our Duchenne newborn screening work in Massachusetts at the #CNSAM
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