Empowering Voices of the Multiple Sclerosis Community for Change
Shaping Tomorrow Together Initiative for MS Community
A unique opportunity for the multiple sclerosis (MS) community to inform new approaches to treating MS.
The National Multiple Sclerosis Society is excited to announce the Shaping Tomorrow Together initiative. This groundbreaking effort is designed to showcase and capture the lived experiences of individuals impacted by multiple sclerosis. It aims to thoroughly document the effects MS has on their lives, their current management strategies, and the treatment benefits that resonate most with them as new therapies are developed.
The EL-PFDD Meeting Details
On an upcoming date, the Society will hold a pivotal externally-led patient-focused drug development (EL-PFDD) meeting. This event, scheduled from 10 am to 3:30 pm (ET), offers a platform for the MS community to come together, share their stories, and provide valuable insights. It will be streamed live to ensure that voices can be heard beyond the physical venue.
Insights from the Community
A survey is currently underway in collaboration with the Accelerated Cure Project, aimed at gathering extensive feedback from those affected by MS. This feedback is meant to ensure a comprehensive grasp of the challenges faced by the MS community. The insights collected from both the meeting and the survey will culminate in a "Voice of the Patient" report. This report will serve as an essential resource for researchers, developers, healthcare professionals, and regulators, illuminating the needs and priorities of those living with MS. Expected to be released in the spring of the following year, this report will pave the way for developments in treatment aligned with community needs.
Community Perspectives on the Initiative
The enthusiasm surrounding the initiative has been palpable, highlighting the necessity of these discussions. Angela White, known as an MS Ambassador, remarked, "Those of us living with MS understand the symptoms and daily impacts like no one else. This is a crucial chance to influence future MS treatments, together with our community."
Bari Talente, JD, Executive Vice President of Advocacy & Healthcare Access at the National MS Society, echoed this sentiment. She stated, "Those impacted by MS are the real experts in what living with the condition entails. This initiative will help reveal gaps in treatment options and inform those in the development space about the pressing challenges that remain for individuals living with MS."
Support from Major Organizations
The Shaping Tomorrow Together initiative has garnered generous support from multiple organizations, which are contributing unrestricted funds to enhance the conversation. Supporters include notable names like Sanofi, AstraZeneca, Biogen, Bristol Myers Squibb, Genentech, the International Progressive MS Alliance, and Novartis.
Get Involved with the Initiative
For those interested in participating or learning more, details about the Shaping Tomorrow Together initiative can be found on its dedicated website. Community members are encouraged to complete the ongoing survey, register for the upcoming meeting, and find opportunities to spread awareness of this vital cause.
Understanding the PFDD Framework
The Patient-Focused Drug Development (PFDD) initiative, launched by the FDA in recent years, has significantly contributed to understanding the lived experiences of individuals with over 150 medical conditions. As an EL-PFDD meeting, the upcoming Shaping Tomorrow Together event provides a unique opportunity for those living with MS and their caregivers to express their experiences and needs directly to stakeholders in the medical field.
What is Multiple Sclerosis?
Multiple sclerosis is a complex and unpredictable disease affecting the central nervous system. Currently, no cure exists for this illness. Symptoms can vary widely and may include severe fatigue, challenges with mobility, cognitive shifts, and vision complications. In the United States alone, an estimated one million people are currently living with MS. Early detection and treatment are critical to minimizing disability and enhancing quality of life. Progress is on the horizon toward a future that is free of MS.
About the National Multiple Sclerosis Society
The National MS Society was founded several decades ago and remains a leader in the global movement aimed at eradicating MS. By funding groundbreaking research and pushing for advocacy changes, the Society works tirelessly to support individuals affected by MS in leading fulfilling lives. For more information about their initiatives or to get involved, connect with them through their official website or their social media platforms.
Frequently Asked Questions
What is the Shaping Tomorrow Together initiative?
This initiative aims to highlight and document the experiences of individuals affected by multiple sclerosis, helping to shape future treatment options.
When will the EL-PFDD meeting take place?
The meeting is set to take place on a specified date from 10 am to 3:30 pm (ET).
What organizations support the initiative?
The initiative is supported by numerous organizations, including Sanofi, AstraZeneca, Biogen, and many others offering unrestricted contributions.
How can community members get involved?
Members of the community can visit the initiative's website to complete surveys, register for meetings, and spread awareness.
What resources will be released following the initiative?
A "Voice of the Patient" report summarizing insights from the meeting and survey will be released in the spring of the following year.
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