Lightnews — Scholar-powered news

Steve Chrzanowski @stevechrz.bsky.social · 2d

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. 🇦🇹💪🧠

1

Steve Chrzanowski @stevechrz.bsky.social · 8d

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

2

Steve Chrzanowski @stevechrz.bsky.social · 13d

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

Steve Chrzanowski @stevechrz.bsky.social · Sep 16

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/

UMass Chan Medical School | ITM

www.ummsjobs.com

Steve Chrzanowski @stevechrz.bsky.social · Sep 14

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

1

Steve Chrzanowski @stevechrz.bsky.social · Sep 4

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

Steve Chrzanowski @stevechrz.bsky.social · Jul 18

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...

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.

www.reuters.com

1

Steve Chrzanowski @stevechrz.bsky.social · Jul 11

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...

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...

www.wbur.org

1

Steve Chrzanowski @stevechrz.bsky.social · Jul 6

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...

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…

www.sciencedirect.com

Steve Chrzanowski @stevechrz.bsky.social · Jun 4

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...

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…

sciencedirect.com

1 2

Steve Chrzanowski @stevechrz.bsky.social · May 25

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.

Steve Chrzanowski @stevechrz.bsky.social · May 21

Fantastic work from @umasschan.bsky.social Neurology at the Annual Research Celebration.

1

Steve Chrzanowski @stevechrz.bsky.social · May 13

Love the @umasschan.bsky.social #Duchenne Program team. Grateful to work with such amazing and dedicated people.

Steve Chrzanowski @stevechrz.bsky.social · May 6

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

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.

www.charleyseckler.com

Steve Chrzanowski @stevechrz.bsky.social · Apr 18

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...

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.

www.nbcnews.com

Steve Chrzanowski @stevechrz.bsky.social · Apr 15

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...

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,...

www.globenewswire.com

Steve Chrzanowski @stevechrz.bsky.social · Mar 8

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...

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 ...

accesspediatrics.mhmedical.com

Reposted by Steve Chrzanowski

UMass Chan Medical School @umasschan.bsky.social · Feb 21

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 discussion

Joel Richter, PhD, the Arthur F. Koskinas Chair in Neuroscience and professor of molecular medicine

1 5 5

Steve Chrzanowski @stevechrz.bsky.social · Feb 21

What an incredible privilege to work with incredible patients, families, providers, scientists, and community partners. #ChildrensLivesMatter

UMass Chan Medical School @umasschan.bsky.social · Feb 20

U.S. Rep. Jim McGovern is hosting a roundtable discussion with UMass Chan Medical School faculty, community partners and families who have benefited from NIH-funded gene therapy treatments and research at the Medical School for the media.

#GeneTherapy

Rep. Jim McGovern, seated at the head of the roundtable at UMass Chan Medical School, with UMass Chan faculty and families who benefit from UMass Chan research in attendance

1

Steve Chrzanowski @stevechrz.bsky.social · Jan 30

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...

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…

www.gainesville.com

Steve Chrzanowski @stevechrz.bsky.social · Dec 21

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.

Steve Chrzanowski @stevechrz.bsky.social · Dec 21

Happy holidays from the @umasschan.bsky.social Duchenne Program team. Sending love, joy, and cheer from our family to yours.

1 1

Steve Chrzanowski @stevechrz.bsky.social · Dec 10

Here's an interesting case from fellowship highlighting some advanced MR imaging and reconstruction techinques and histologic findings of a Perineuroma that caused footdrop.

Perineuroma Caused Isolated Footdrop | Neurology

www.neurology.org

Steve Chrzanowski @stevechrz.bsky.social · Dec 5

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.

1

Steve Chrzanowski @stevechrz.bsky.social · Nov 19

“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 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...

imagingnmd.org