Shaping Tomorrow Together Initiative Elevates Lived Expertise of People Affected by Multiple Sclerosis

Unique opportunity for the multiple sclerosis (MS) community to inform new approaches to treating MS

WASHINGTON, Oct. 22, 2025 /PRNewswire/ -- The National Multiple Sclerosis Society (Society) announces Shaping Tomorrow Together, a groundbreaking effort to highlight and document the lived experience of individuals affected by multiple sclerosis (MS). This initiative aims to fully describe the impact of MS on the lives of those affected, their current management strategies, and the treatment benefits that matter most to them as new therapies are developed.

On October 29, 2025, from 10 am-3:30 pm (ET), the Society will host the Shaping Tomorrow Together externally-led patient-focused drug development (EL-PFDD) meeting, conducted as a parallel effort to the U.S. Food and Drug Administration's (FDA) PFDD program. The meeting will be streamed live, bringing members of the MS community together to share their experiences and perspectives. Additionally, a companion survey is currently being conducted in collaboration with the Accelerated Cure Project to ensure a comprehensive understanding of the challenges faced by as many people affected by MS as possible. A "Voice of the Patient" report will summarize insights gathered from the initiative meeting and survey, creating an invaluable and enduring resource for researchers, drug development sponsors, regulators, healthcare professionals, and others. The report will be released in the spring of 2026.

Initial discussions about the initiative have generated enthusiasm and validated the need for this conversation. Angela White, MS Ambassador, emphasized, "Those of us living with MS know better than anyone the symptoms and daily impacts that must be addressed to stop MS, preserve function, restore what's been lost, and live our best lives. I'm thrilled for the chance to shape future MS treatments – together with the MS community – through the Shaping Tomorrow Together EL-PFDD survey and meeting."

"We know that those affected by MS are the experts in living with MS." remarked Bari Talente, JD, Executive Vice President of Advocacy & Healthcare Access at the National MS Society. "This initiative will pinpoint gaps in current treatment options and inform researchers, clinicians, the FDA and those developing treatments about the biggest challenges still facing those living with MS."

Organizations generously supporting the Shaping Tomorrow Together initiative with unrestricted contributions include Sanofi, AstraZeneca, Biogen, Bristol Myers Squibb, Genentech, the International Progressive MS Alliance, and Novartis.

How to Stay Informed and Get Involved

Visit the Shaping Tomorrow Together initiative website at nationalmssociety.org/shapingtomorrowtogether and complete the survey, register for the meeting, and learn about opportunities to participate and spread the word.

About PFDD and the Shaping Tomorrow Together Initiative

The Patient-Focused Drug Development (PFDD) initiative, commenced by FDA in 2013, has been instrumental in providing a comprehensive understanding of the lived experience of more than 150 medical conditions to date. As an EL- PFDD meeting, the October 29, 2025, Shaping Tomorrow Together meeting provides people living with MS and carepartners a unique opportunity to express their experiences, needs, and priorities directly to FDA staff, researchers, and developers of medical therapies.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable disease of the central nervous system. Currently, there is no cure. Symptoms vary from person to person and may include disabling fatigue, mobility challenges, cognitive changes, and vision issues. An estimated 1 million people live with MS in the United States. Early diagnosis and treatment are critical to minimizing disability. Significant progress is being made to achieve a world free of MS.

About the National Multiple Sclerosis Society

The National MS Society, founded in 1946, is the global leader of a growing movement dedicated to creating a world free of MS. The Society funds cutting-edge research for a cure, drives change through advocacy, and provides programs and services to help people affected by MS live their best lives. Connect to learn more and get involved: nationalmssociety.org, Facebook, X (formerly known as Twitter), Instagram, YouTube or 1-800-344-4867.

Media Contact: Natalie Mathes
Phone: 347-901-9352
Email: [email protected]

SOURCE National Multiple Sclerosis Society