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Now live! Explore the program for the upcoming 2024 Global Conference, taking place May 5-8, 2024.

TRAIN Newsletter — June 2022

TRAIN Newsletter — June 2022

TRAIN eNews is delivered directly to organizations in The Research Acceleration and Innovation Network (TRAIN). TRAIN is an affinity network of foundations interested in taking a more strategic and entrepreneurial approach—what some refer to as "venture philanthropy"—to their role as funders of medical research. TRAIN convenes dozens of forward-thinking foundations to learn from each other and share their novel solutions with the rest of the medical research system. To learn more about becoming a TRAIN organization, email us at [email protected] to apply.

News From FasterCures

Cell and Gene Therapy Virtual Roundtable

FasterCures is hosting a virtual roundtable on June 21 to discuss the current landscape of cell and gene therapy. This roundtable will feature Peter Marks, director of the Center for Biologics Evaluation and Research at the Food and Drug Administration (FDA), and PJ Brooks, acting director, Division of Rare Diseases Research Innovation, National Center for Advancing Translational Sciences of the National Institutes of Health (NIH). We will cover the work FDA and NIH are doing to advance gene therapy manufacturing and discuss the current policy landscape. Registration is now open. For more information go here.

Milken Institute Hosts 25th Annual Global Conference

The 25th Milken Institute Global Conference took place May 1-4, 2022, and convened the best minds in the world to tackle urgent global challenges and envision exciting opportunities to make positive change. The event brought together individuals with the capital, power, and influence to catalyze change in how we think about health, finance, technology, philanthropy, industry, and media. Throughout the past two years, the pandemic transformed the way we convene, collaborate, and connect—sparking both innovation for what's next and gratitude for what once was. The 25th annual Global Conference centered on "Celebrating the Power of Connection." View videos from all public sessions.

New Cohort of Emerging Leaders Selected for FasterCures' LeadersLink Program

From an exceptionally well-qualified pool of candidates, FasterCures selected six applicants to be part of the next LeadersLink cohort. LeadersLink is a FasterCures professional development and mentoring program that aims to help promising nonprofit research leaders from around the world build high-performing organizations and facilitate the growth of their peer support network. This year's cohort includes leaders from VHL Alliance, Shwachman-Diamond Syndrome Alliance, CURE Epilepsy, Ontario Brain Institute, MPN Research Foundation, and Myhre Syndrome Foundation. These organizations have also been added to TRAIN, and FasterCures will share updates as they progress in their goals to build patient data resources. Meet the 2022-2023 cohort.

New TRAIN Organizations

We are pleased to announce that we have accepted 13 organizations into TRAIN so far in 2022. These organizations, listed below, range in size and experience supporting research for their patient communities. Join us in welcoming the newest organizations to TRAIN!

TRAIN Organization Updates

The National Multiple Sclerosis Society Develops Pathways to MS Cures Roadmap and Playbook

Over the last few years, the National Multiple Sclerosis Society has been developing an initiative called Pathways to Cures. The initiative includes a scientific roadmap entitled "Pathways to cures for multiple sclerosis: A research roadmap" published in the Multiple Sclerosis Journal and an accompanying implementation guide. The initiative has been endorsed by 24 organizations around the world, and more are expected to join. Learn more about the National Multiple Sclerosis Society's Pathways to Cures.

Roivant Social Ventures and Sanford Burnham Prebys Partner to Increase Diversity and Inclusion in Biopharma

Roivant Social Ventures and Sanford Burnham Prebys announced their partnership to develop a real-world drug development training program, aiming to accelerate therapeutic innovation by prioritizing unmet medical needs, engaging underserved populations, and training students from diverse backgrounds. This collaboration looks to address three major issues they identified in the biopharma industry:

  • Lack of diversity in biopharma leadership and in clinical trials

  • Mismatch in drug development education and the skills needed to be successful in biopharma

  • Deprioritized drug assets sitting "on the shelves" in biopharma.

Chordoma Foundation Launches CF Labs

Early this year, the Chordoma Foundation identified a need and an opportunity to bring increases in nimbleness and efficiency to chordoma R&D, which led to the launch of CF Labs: the first lab 100 percent dedicated to chordoma research. To its knowledge, it's also the first lab of its kind for any form of cancer. But the idea is not completely without precedent. The aim is to follow in the footsteps of the Cystic Fibrosis Foundation Therapeutics Lab and the ALS Therapeutic Development Institute, both of which have played a catalytic role in advancing multiple treatments for their respective diseases.

Initially, CF Labs' central focus is on accelerating the repurposing of existing drugs for chordoma. The next phase for the lab will be to establish the capabilities needed to streamline the development of new drugs for brachyury. Find out more about the new CF Labs.

News You Can Use

2022 PCORI Annual Meeting Scholarships for Patients and Ambassadors

The Patient-Centered Outcomes Research Institute (PCORI) has announced that it will be offering financial scholarships for patient and caregiver stakeholders to participate in person at the 2022 PCORI Annual Meeting in Arlington, VA, Wednesday, October 26 and Thursday, October 27. The event serves as a report to the nation on PCORI's progress in funding initiatives to determine which care approaches work best, for whom, and under what circumstances. Go here to apply prior to June 6 and learn more about this opportunity.

MIT Releases Paying for the Cures Toolkit for Practitioners

The Financing and Reimbursement of Cures in the US (FoCUS) Project at MI NEWDIGS has developed Paying for the Cures Toolkit as a resource for practitioners facing the financial challenges of offering, choosing, reimbursing, or supporting an advanced durable therapy. This toolkit enables you to:

  • Understand the FoCUS precision financing solutions, which issues they address for which stakeholders, and their implementation challenges

  • Jumpstart your organization to evaluate your needs, customize precision financing options, consider the implementation challenges, and arrive at a preferred solution designed for your situation based on the experiences of FoCUS pilots by providing a series of questions, frameworks, and tools.