Submit a Comment

Help inform future drug development by sharing your input as members of the LBSL community! Submit a comment below on any of the following questions for publication in our Voice of the Patient report after the meeting! Comments should be submitted individually by caregivers and patients. This comment period closes on Sept. 1, 2025.

TOPIC 1: LBSL SYMPTOMS AND DAILY IMPACT

Of all the symptoms and health effects of LBSL, which symptoms have the most significant impact on your or your loved one’s life?

How does LBSL affect you or your loved one on best and on worst days? Describe your best days and your worst days.

How have your or your loved one’s symptoms changed over time? How has the ability to cope with the symptoms changed over time?

Are there specific activities that are important to you or your loved one that they cannot do at all or as fully as they would like because of LBSL?

What do you fear the most as you or your loved one gets older? What worries you most about your or your loved one’s condition?

TOPIC 2 - Current and Future Approaches to LBSL Treatment

What are you currently doing to manage your or your loved one’s LBSL symptoms?

How well do these treatments treat the most significant symptoms and effects of LBSL?

What are the most significant downsides to your or your loved one’s current treatments and how do they affect daily life?

Short of a complete cure, what specific things would you look for in an ideal treatment for? What factors would be important in deciding whether to use a new treatment?

Would you or your loved one be open to participating in a clinical trial? Why or why not?