Stronger Together: Highlights from 2025 SciFam
- James Immekus
- Sep 8
- 4 min read
Philadelphia, PA (August 1-5, 2025)
Aside from a few rainy moments, the sunlit banks of the Delaware River set the scene for an impactful 2025 Scientific & Family Conference in beautiful Philadelphia. In between and around conference sessions, families, clinicians, and researchers alike braved the humidity, stepping out to the venue’s shimmering waterfront views, to take in the energy of the city, and some even tested their stamina on the 72 stone steps made famous by Rocky at the Museum of Art. Just blocks away, others gazed at the Liberty Bell, reminding attendees of the resilience and hope that SciFam aims to inspire. (Fun fact: the bell was originally named the “State House Bell” before abolitionists in the 1830s adopted it as a symbol of freedom and equality.)
At SciFam, that same spirit of resilience filled every hallway and session. Over 344 attendees—affected individuals and their families , caregivers, clinicians, researchers, and industry representatives—broke bread, made discoveries, shared stories, and forged friendships. Families had the rare chance to sit shoulder-to-shoulder with world-class doctors, and researchers, conveying their CMD journeys firsthand. This direct exchange is at the very heart of Cure CMD’s work: ensuring that the voices of the community guide research priorities and care breakthroughs.
“We felt so welcomed by the Cure CMD community. The conference was organized beautifully and your efforts certainly paid off in so many ways.” – Krista Puffer-Rose
Conference Highlights
60 Sessions Across 5 Days: Covering care, research, advocacy, quality of life, and community connections.
Breakouts for All 5 CMD Subtypes: Tailored discussions ensured every family could share their journey, and their concerns.
100 Researchers & Clinicians: Bringing the latest science, trial readiness strategies, and care innovations.
9 Industry Representatives: From pharma and health industries, highlighting strong collaborations.
Community Programming: Caregiver wellness sessions, advocacy training, and evening social events encouraged families and experts to connect beyond the topics of research and care.
Kids Camp: From Magic to Mayhem
For children attending SciFam, it was about shared joy and friendship during a wide array of engaging activities. Kids Camp created a safe space and unforgettable memories:
A science show filled the room with colorful chemical reactions and mind-bending experiments, sparking curiosity in even the youngest minds.
A wildlife encounter gave kids the chance to meet reptiles, mammals, and birds up close—an awe-filled mix of education and fun.
A magician and juggler had children laughing and gasping as ordinary objects disappeared and reappeared in mid-air.
Face painting, glitter tattoos, and intricate henna designs let kids transform into lions, superheroes, or fairies for the day. Giggles ensued.
Kids Camp wrapped up with a burst of music and movement as CMD researcher and BollyX instructor Avnika Ruparelia led a Bollywood-inspired dance session.
These experiences not only brought joy to the children but also gave caregivers the space to fully participate in sessions, knowing their kids were engaged and safe – even if they came back a little sillier.
Young Adult Programming
2025 SciFam offered space for teens and young adults to connect, learn, and share openly about topics important to them Sessions ranged from icebreakers and peer meetups to practical workshops on finances, independence, and inclusion. Clinicians joined to answer questions about current and future healthcare concerns. Conversations on intimacy, identity, and relationships offered safe, supportive dialogue.
Scientific Meeting: Advancing Research Together
The final two days of SciFam were dedicated to the CMD Scientific Symposium, where 100 of the world’s leading neuromuscular researchers and clinicians gathered.
Key themes included:
Latest Advances in Therapeutics – Updates on cutting-edge gene therapies, novel treatment strategies, and disease modeling.
Biomarkers & Natural History Studies – Critical tools to better understand disease progression and prepare for clinical trials.
Shared Approaches Across Subtypes – While CMD subtypes differ in genetic origin, many therapies currently being studied may apply across conditions, accelerating progress for everyone.
Looking Ahead
2025 SciFam didn’t end when the last session wrapped. The collaborations launched in Philadelphia are already shaping what comes next, from funding new research projects to advancing innovative therapies such as viral vector platforms and 3D skeletal muscle modeling. Progress toward Subtype-Specific Care Guidelines continues, ensuring families and clinicians have the most up-to-date information on how to optimize care and respond to illnesses. Just as important, community voices remain central—guiding research priorities so efforts being made in the lab reflect the real needs of those living with CMD.
For those who couldn’t attend SciFam -- or for attendees who wish to revisit key sessions --session recordings are being made available on our YouTube channel over the next few weeks. Keep a lookout as well for information about an opportunity to connect virtually with experts in the coming months.
Want to relive the magic? Head over to our CrowdPic page and check out the more than 800 photos from 2025 SciFam -- and if you snapped photos during the conference, we’d love for you to add yours too!
