Meet the Scientists Behind SMA Research and Discover What’s Coming Next

The Family-Friendly Poster Session is one of the most anticipated events at the Annual SMA Conference! This year’s session will be held on Friday, June 26, from 6:30 pm to 8:30 pm in the Grand Harbor Ballroom at Disney’s Yacht and Beach Club Resort.

The Family Friendly Poster Session is an opportunity for families to ask questions about the research they have participated in and fundraised for, while researchers have the chance to meet the families impacted by their work.

Photo from a previous Family-Friendly Poster Session

 

At this year’s Family Friendly Poster Session, research highlights will be presented by:

  • Staff from Cure SMA’s Development, Research, and Advocacy Teams

One of Cure SMA’s top priorities is to fund, conduct, and direct research that improves treatment and clinical care for everyone living with SMA. Learn about how we are working collectively to raise funds for research, share data from the community, and advocate for the community’s priorities.

  • Scientists who have been awarded a Basic Research Grant from Cure SMA

Each year, Cure SMA awards grant funding to scientists from around the world for projects that address specific unanswered questions in SMA biology. Visit their posters to learn more about these exciting projects and how they are shaping our knowledge of SMA and laying the foundation for future therapies.

  • Clinical researchers who are members of the Adult & Pediatric Neuromuscular Clinical Research Network (APNCR)

The APNCR is a network of SMA clinical trial sites made up of healthcare providers striving to achieve the best possible clinical outcomes for the SMA community. Cure SMA provides funding for the ANPCR in partnership with the Erin Trainor Memorial Fund. See some of APNCR’s most recent insights into how to optimize SMA treatment and clinical care.

  • Researchers from Cure SMA’s pharmaceutical Conference

Cure SMA works alongside pharmaceutical companies to ensure the SMA community's preferences are considered throughout SMA drug development. Come hear about the latest updates in clinical trials.

Below are the 2026 Family Friendly Poster titles and presenters. We look forward to seeing you!

 

2026 Family Friendly Posters

 

1. Combination therapies to enhance synaptic function

     Allison Ebert, PhD, Medical College of Wisconsin

 

2. Life's a dance: Too little SMN to pass around

Anton Blatnik, PhD, Case Western Reserve University

 

3. A post‑approval clinical study of intrathecal onasemnogene abeparvovec in study participants with spinal muscular atrophy

Bakri Elsheikh, MBBS, The Ohio State University, Wexner Medical Center

 

4. Long-term follow-up data in Zolgensma-treated study participants with spinal muscular atrophy

Carol Welch, RN, BSN, MSCN and Lesley Milliner, BSN, MBA, Novartis

 

5. STELLAR-1, STELLAR-2, and SOLAR: Phase 3 study designs evaluating salanersen in spinal muscular atrophy

Christabella Cherubino, DC, ScD, MS, Biogen

 

6. SMA beyond the motor neuron: A study of whole-body treatment effects

Cortnie Hartwig, PhD, MCB Clinical Research Centers

 

7. Our mission in motion: Building breakthroughs together

Cure SMA Development Team

 

8. The role of treated muscle in SMA

Elana Molotsky, PhD, Johns Hopkins University

 

9. Dual therapy for symptomatic SMA newborns with 2 copies of SMN2

Elicia Estrella, MS, LCGC, Boston Children's Hospital

 

10. Treating SMA before birth: How prenatal treatment changes outcomes

Emma Sutton, PhD, The Ottawa Hospital Research Institute

 

11. Individualizing treatment for babies with SMA detected through newborn screening: One center's experience

Eric Cahue-Gasca, BS, Ann & Robert H Lurie Children's Hospital of Chicago

 

12. The story of apitegromab: Science, progress, and patients

Erik DeBoer, PhD, Scholar Rock, Inc.

 

13. Key findings from the Cure SMA unmet needs among adults across the healthcare spectrum survey

Erin Welsh, MPH, Cure SMA Research Team

 

14. Medical emergencies in SMA: Development of a European emergency card template

Federica Fontana, PhD, SMA Europe

 

15. The adult SMA treatment and research program at The Ohio State University

Gia Cinkay, CCRP, The Ohio State University Wexner Medical Center

 

16. Manatee Part 1: Roche/Genentech's clinical study of emugrobart (gym329) in combination with risdiplam

Helen Lin, MD, Genentech, Inc., South San Francisco, CA, USA

 

17. Time to sparkle: The phase 2 study in SMA

Karolien Van Huynegem, PhD, argenx

 

18. Adult-onset (Type 4) SMA: Insights into early symptoms, diagnosis, and unmet needs

Lauren Eisenman, MS, Cure SMA Research Team

 

19. Behind the diagnosis - How SMA impacts the lives of caregivers

Laurey Brown, PT, DPT, Ann & Robert H Lurie Children's Hospital of Chicago

 

20. Understanding SMN's role in neuronal RNA dynamics

Licia Corona and Lorina Bilalli, Luxembourg Centre for Systems Biomedicine - University of Luxembourg

 

21. Evaluating the evolving SMA phenotype in children: Results from the Cure SMA Community Update Survey

Lisa Belter, MPH, Cure SMA Research Team

 

22. Neuromuscular junction recovery following SMN up-regulation in mouse models of SMA

Lyndsay Murray, PhD, University of Edinburgh

 

23. How SMA community stories helped secure federal research funds

Maynard Friesz and Sarah Bellish, Cure SMA Advocacy Team

 

24. How does loss of muscle in SMA affect whole body metabolism?

Melissa Bowerman, PhD, Keele University, UK

 

25. Voices of SMA caregivers: Experiences from across the United States

Ndeye Yague, MS, Cure SMA Research Team

 

26. Optimizing the pediatric to adult transition process in a patient and family focused way - the CHOP-PENN model

Oscar Mayer, MD, The Children's Hospital of Philadelphia

 

27. Learn about the DEVOTE trial and the high dose regimen of Spinraza® (nusinersen)

Puanoa Higginson, MBA, Biogen

 

28. The SMA effort measures perceived physical fatigability in SMA

Rafael Rodriguez-Torres, PT, DPT, Cara H. Kanner, PT, DPT, EdD, Thomas Corbeil, MPH, Melanie Wall, PhD, and   Jacqueline Montes, PT, EdD, Department of Rehabilitation and Regenerative Medicine, Columbia University Irving Medical Center

 

29. Bone health in individuals with spinal muscular atrophy who have received disease-modifying therapy

Regina Laine, PNP, MSN, Boston Children's Hospital

 

30. Emerging treatments in development for patients living with SMA: Insights from clinical specialists

Richard S. Finkel, MD, Center for Experimental Neurotherapeutics, St. Jude Children's Research Hospital, Memphis, TN, USA

 

31. Real world experiences of risdiplam treatment: Feeding and swallowing outcomes in the Cure SMA community update survey

Sheila Shapouri, PharmD, MS, Genentech, Inc.

 

32. Pregnancy outcomes in individuals with SMA: New natural history of pregnancies in the treated SMA population

Shelby Vogt-Domke, B.S., Stanford University

 

33. Reading RNA to understand SMA: How motor neurons change their messages

Stephen Brown, PhD, Johns Hopkins University

 

34. An update on ignaseclant (nmd670): An investigational oral therapy enhancing muscle activation to improve strength, endurance, and daily function in adults with SMA

Vera Kiyasova MD, PhD and Dan Brennan, NMD Pharma A/S

 

35. Targeting mitochondria, the powerhouse in motor neurons, for treating SMA

Zhaofa Xu, Ph.D., Northwestern University and Lurie Children's Hospital of Chicago

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