What to Expect at the 2025 Scientific & Family (SciFam) Conference: Q&A with Rachel Alvarez

The 2025 Scientific & Family (SciFam) Conference will be held August 1-5, 2025, at the Hilton Philadelphia at Penn's Landing in Philadelphia, PA, USA, and is hosted by Cure CMD, A Foundation Building Strength, and Team Titin. This highly anticipated event is a four-day, in-person, neuromuscular conference for stakeholders in congenital muscular dystrophy, nemaline myopathy, and titinopathy. Although virtual attendance won’t be available this year, we plan to host an online event sometime following the conference. Stay tuned for more information later this year. The conference gathers stakeholders to get the latest updates from researchers and clinicians, participate in insightful discussions that drive innovation, and connect with community members from across the globe. Why attend? Learn from experts, connect with peers, and share your experiences.

We recently had the opportunity to speak with Rachel Alvarez, Cure CMD’s Executive Director, about what to expect at this year’s SciFam Conference:

How did you and the SciFam Planning Team select topics for this year’s conference?

We typically start with a list of 10-15 potential topics, most often suggestions or requests from the community. We then consider the feasibility, logistics, availability, and costs to host qualified speakers vs. how impactful the topic will be across our broad audience — and the likelihood that people will attend the session. After this process, we are typically left with about half of our original topic list as viable options, and then, looking at the overall agenda and how much time we have available, we make our final choices.

How will attendees get the latest updates in research and care?

Saturday and Sunday will include plenary and subtype-specific breakout sessions for the affected community on the latest medical guidance and research, as well as bonus sessions centered around quality of life topics.

A significant impact of SciFam year after year is being able to bring our widespread global community together. What opportunities will be available for attendees to connect in person?

Attending the Family portion of the conference, August 1-3, will offer attendees the opportunity to connect with fellow CMD Community Members and share experiences. There will be various social opportunities, including 2025 SciFam’s kick-off event Friday afternoon (August 1) with a Welcome Reception for everyone who plans to arrive that day, followed by optional social activities after dinner.

The Family Conference will also allow clinicians and researchers to connect with affected individuals and their families, to not only answer their questions but to help inform CMD research. This year, we will not be scheduling individual researcher presentations for families, but a more organic discussion about the state of clinical trial readiness, treatments in development, and the hurdles we are working to overcome. We'd greatly appreciate affected individuals and their families’ participation in this session.

Can you tell us more about how researchers and clinicians can participate in 2025 SciFam?

On August 4-5, we will host the Scientific Symposium, this year scheduled to follow the Family Conference. This 1.5-day invitation-only meeting is a forum for researchers and clinicians to present cutting-edge findings, discuss emerging therapies, forge collaborations, and set research priorities for the five primary subtypes of congenital muscular dystrophy, nemaline myopathy, and titinopathy.

Researchers and clinicians will spotlight our organizations' latest funded research, panel discussions around overlapping efforts toward identifying treatments across the subtypes, and update research priorities for each subtype. Attending this portion of the conference will allow researchers and clinicians to connect with their colleagues, share their insights, and identify potential collaboration opportunities.

Additionally, we will be displaying all submitted posters digitally throughout the entire conference, and will also host two informal poster sessions: one for families and another for researchers and clinicians.

What are you most excited about for 2025 SciFam?

My favorite aspect of SciFam is connecting with our community in person after only communicating online for months or years. I love catching up with everyone and introducing new families to their tribe — many of whom have never met another person living with CMD, or a clinician who actually knows more about their or their child's condition than they do.

Clinicians and researchers come to connect with families and one another in a unique environment that promotes everyone's interests, needs, and ideas. And especially for researchers, many of whom have never met an individual living with the disease they are studying, SciFam has proven to have a tremendous impact on their work.

While there are lots of opportunities to connect virtually between conferences, coming to SciFam can be a life-changing experience after living in relative isolation. Families first come to SciFam to learn about research and care optimization — but they keep coming back for the connections. Powerchair races through the halls, finding your new best friend that may live in the next town over or halfway around the world, or getting that one question answered that could unlock a healthier future, but that no one on your local team seems to be able to help with. All of this is why we continue to host SciFam.

Details About Registration

Join us in Philadelphia, PA, USA, to connect, learn, and share alongside affected individuals, their families, clinicians, researchers, advocacy partners, and industry representatives in the neuromuscular space. Registration, event information, Preliminary Agenda, and a Philadelphia Visitors Guide can be found at scifam.info. Take advantage of available hotel scholarships by applying by April 30, 2025 — learn more and apply here.