TRAIN eNews is delivered directly to organizations participating 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, visit the TRAIN application page.
In This Issue
News from FasterCures
TRAIN Organization Updates
News You Can Use
News from FasterCures
Welcome the 2024–25 LeadersLink Cohort
We are pleased to introduce this year’s cohort of LeadersLink participants. Nine exceptional individuals were selected from a competitive pool of applicants. The FasterCures’ LeadersLink program aims to empower emerging leaders in patient-centered nonprofits that fund or participate in biomedical research. As part of the program, participants will address their organizational priorities, guided by mentors from FasterCures Changemakers and other experts in our network. This year’s cohort will focus on engaging diverse patients throughout the research and development process. For more information on our LeadersLink participants and to share this exciting news go to FasterCures’ LinkedIn and X.
TRAIN Webinar: Building Impactful, Transparent, and Reciprocal Relationships with Industry Partners
FasterCures’ The Research Acceleration and Innovation Network (TRAIN) hosted a webinar on the strategies and considerations involved in establishing impactful partnerships between patient organizations and industry researchers. It emphasized the critical role of partnerships in driving treatment options and ensuring the inclusion of patient voices in research and development activities. View the webinar for valuable insights and best practices for organizations seeking to establish or strengthen partnerships to advance medical research.
FasterCures Hosted the Research Partnership Maturity Model Interactive Workshop
FasterCures hosted the Research Partnership Maturity Model Interactive Workshop in Boston on April 5. The workshop convened patient organization leaders to discuss how they can utilize FasterCures’ Research Partnership Maturity Model to develop strategies for advancing research partnerships and catalyzing biomedical research. FasterCures will share additional updates and resources coming out of the workshop with our community.
TRAIN Organization Updates
MMRF Founder Publishes Memoir on Her Cancer Experience
Kathy Giusti, founder of the Multiple Myeloma Research Foundation (MMRF), published a book based on her cancer experience. Fatal to Fearless is part memoir, part how-to for patients to navigate the difficulties of a cancer diagnosis.
Tower Cancer Research Foundation Integrates Dr. Susan Love Foundation
In January, the Tower Cancer Research Foundation (TCRF) Board of Directors announced it would integrate the work and assets of Susan Love, founder and chief visionary officer of the Dr. Susan Love Foundation for Breast Cancer Research, into TCRF. To extend its reach, TCRF has also established the Dr. Susan Love Fund for Breast Cancer Research. To lead the organization in changing the course of cancer, TCRF announced Christopher Clinton Conway as its new CEO.
Blood Test Developed with Alzheimer’s Drug Discovery Foundation Funding Shows Promise
A new blood test from ALZPath, supported by the Alzheimer’s Drug Discovery Foundation’s Diagnostics Accelerator, shows promising results in a JAMA Neurology study. This novel blood test is a less invasive, less expensive diagnostic exam that could detect Alzheimer’s early when treatment is most effective.
The First Biological Staging System for Parkinson’s
An international team of patient, research, and industry leaders has proposed the first iteration of a research framework for staging and defining Parkinson’s disease based on its underlying biology, according to the Michael J. Fox Foundation for Parkinson’s Research. The new research tool uses biomarkers that can detect Parkinson’s objectively in a living body. The framework is expected to have an immediate impact on research, speeding clinical trials and increasing the success of scientific discovery.
News You Can Use
The Reagan-Udall Foundation for the FDA and FDA to Host Virtual and In-Person Workshop
The Reagan-Udall Foundation for the FDA and the Food and Drug Administration (FDA) are collaborating to host a virtual and in-person public workshop on May 13, from 10 a.m. to 4 p.m. ET, focused on natural history studies and registry data in rare disease drug development. This event will bring together experts from rare disease patient advocacy, research, industry, and other key stakeholders to discuss the role and design of registries and natural history studies to inform the development of rare disease treatments. Learn more and register.
New Yorker Article: What Would It Mean for Scientists to Listen to Patients?
In January, the New Yorker published the article “What Would It Mean For Scientists to Listen to Patients?” exploring the topic of patient engagement. The article describes the LISTEN clinical-research effort (Listen to Immune, Symptom, and Treatment Experiences Now) led by renowned Yale scientists Harlan Krumholz, cardiologist and clinical-outcomes researcher, and Akiko Iwasaki, immunologist, to understand long COVID and similar conditions.
NORD Releases State Report Card
The National Organization for Rare Disorders (NORD) released its annual state report card, which grades each state and Washington, DC, on policies that impact rare disease patients. Find out how your state was graded.
Rare Conversations Report: Shaping the Future of Rare Disease Policy
In December, Alexion Pharmaceuticals, Inc. convened health-care experts, patient advocates, and thought leaders for Rare Conversations, a health policy forum intended to shape the future of rare disease policy. A report, A Vision for Rare Disease Policy, was recently released based on a conference discussion. This report includes common themes that emerged, such as protecting progress cultivated by the Orphan Drug Act, addressing gaps in coverage in the Inflation Reduction Act (IRA), and ensuring patient access to cell and gene therapies.
IQVIA to Host Patient Organization Webinar Series
IQVIA is launching the Patient Organization Webinar Series starting on April 25. The series will cover a range of topics, including working with industry, IRA implementation, and patient access to novel treatments. The series aims to bring together, involve, and support the community of patient organizations and will feature patients, caregivers, and thought leaders. Register for the webinars.