One way Cure SMA’s Annual SMA Conference encourages collaboration among academics, industry executives, government officials and families is through its Family Friendly Poster Session – a yearly event in which researchers present their findings about spinal muscular atrophy (SMA) in an accessible format.
Registration is now open for the annual conference, which is set for June 29-July 2 at Disney World’s Contemporary Hotel in Orlando, Florida. The Family Friendly Poster Session will be held Friday, June 30, at 7:00 p.m. in the Fantasia Ballroom.
Recent significant advances in SMA research include 17 ongoing drug development programs, five of which are in clinical trials already. The poster session lets researchers see the impact of their work on families. It also gives families the chance to ask questions, understand the latest developments and meet the researchers for whom they have been raising funds.
This year’s session will feature 30 presenters and their studies, many of them funded by Cure SMA, according to a press release. Here are a few of them:
- Utz Fischer and Oliver Gruss of Germany’s Universities of Wuerzburg and Bonn: “Regulation of SMN by post-translational modifications.”
- Marc-Olivier Deguise and Rashmi Kothary of Ottawa Hospital Research Institute: “Is the immune system affected in SMA patients?”
- Vanessa Christie-Brown of SMA Europe: “Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients.”
- Hikari Tanaka and colleagues from the F. Edward Hébert School of Medicine: “Uncovering ways to slow SMN destruction.”
- Jackie Glascock and colleagues: “Cure SMA newborn screening for spinal muscular atrophy: Federal and state implementation.”
- AveXis: “AveXis: Committed to the development of therapies for patients affected by rare and life-threatening neurological genetic diseases.”
- Roche: “Roche SMA drug program for SMA.”
- Rosangel Cruz and colleagues from Cure SMA: “Externally-led patient focused drug development meeting for spinal muscular atrophy.”
- Tim Seabrook and colleagues, from F. Hoffmann-La Roche: “Patient partnership in SMA.”
- Yongchao Ma, PhD from Northwestern University, who will present on “Targeting mitochondria, the powerhouse in motor neurons, for treating SMA.”
- Dr. Chad Heatwole of the University of Rochester: “Gathering your opinion on treatment effectiveness: The creation and use of the SMA-Health Index.”
- Dr. Christine DiDonato and colleagues from Anne & Robert H. Lurie Children’s Hospital: “The Lurie Children’s Hospital experience: Spiranza dosing across the age spectrum, quantitative assessment of function and efforts towards molecular markers and new therapies.”