As a member of SMA Europe’s Treatment Committee, SMA UK’s Head of Advocacy and Community, Portia Thorman, is preparing to join advocates from across Europe in Switzerland on Monday, May 27th. With access to treatment established, this important gathering will bring together voices from the SMA community to engage with a leading pharmaceutical company about the ongoing and emerging needs of individuals living with Spinal Muscular Atrophy (SMA).

Your Voice Matters

We believe that the most impactful advocacy comes from those directly affected by SMA. That’s why we are reaching out to you, our valued community, to share your thoughts and experiences. Your insights can shape the discussions and influence the future of SMA treatments.

The discussions will focus on two key areas:

1. Remaining and Emerging Unmet Needs: We want to understand the challenges that still exist for people living with SMA. What issues do you hope future treatments will address? Whether it’s new symptoms, daily life hurdles, or other health concerns, your input is crucial.
2. Measuring Treatment Impact on Adults with SMA: We aim to ensure that the impact of treatments is comprehensively understood. What should clinicians be measuring to gauge the effectiveness of treatments in adults with SMA? Are current assessments missing critical elements? We need your feedback to identify gaps and propose solutions.

Get Involved

Ensure your voice is heard and share your experiences, thoughts, and suggestions on the above topics by emailing Portia Thorman directly at portia.thorman@smauk.org.uk or by contacting us across our social media platforms! Your contributions will help guide meaningful conversations with those who have the power to drive change.

By coming together, we can highlight the critical areas that need attention and work towards a future where every person with SMA receives effective treatment.S