Skip to main content

IMCPL and A Matter of Time

The documentary A Matter of Time tells the story of the EB Research Partnership and the venture philanthropy model that helped inspire Rare Ventures, which now seeks to scale this approach across many rare diseases. The approach combines scientific discovery, advanced technologies, translational development, and biomanufacturing to shorten the path from promising research to meaningful therapies.

Click to view A Matter of Time on YouTube

IMCPL is proud to be part of this effort through the Center for Rare Disease Therapy (CRDT), led by Dr. Jerry Vockley. The CRDT investigator team includes Drs. Jerry Vockley, Jerry Bedoyan, Quasar Padiath, Gary Thomas, and Devanjan Sikder, joined by Children's Hospital of Pittsburgh investigators Drs. Arjumand Ghazi, Eric Goetzman, and John Wang.

Initial programs will advance therapies for PACS1 syndrome, LMNB1 related adult onset autosomal dominant leukodystrophy (ADLD), and very long chain acyl CoA dehydrogenase deficiency (VLCADD). IMCPL will contribute the translational, manufacturing, analytical, quality, and regulatory capabilities needed to move these discoveries toward clinical development, partnering with ElevateBio to help advance promising candidates toward the clinic.

Beyond these first three programs, the goal is to establish a repeatable pathway for accelerating therapies across additional CNS, metabolic, and other rare diseases, turning scientific possibility into treatments for patients who have waited far too long.

Here are few references:
  1. Forbes, Greg Licholai, MD. “New $25 Million Accelerator Bets On Better Model For Rare Disease.” August 13, 2026. https://www.forbes.com/sites/greglicholai/2026/08/13/new-25-million-accelerator-bets-on-better-model-for-rare-disease/
  2. The Wall Street Journal, Brian Gormley. “Most Rare Diseases Have No Approved Drug. This Accelerator Aims to Help.” August 12, 2026. https://www.wsj.com/pro/venture-capital/most-rare-diseases-have-no-approved-drug-this-accelerator-aims-to-help-a5a51534
  3. Pittsburgh Post-Gazette. “RK Mellon Foundation pledges $25M to launch rare disease therapy hub in Pittsburgh.” August 12, 2026. https://www.post-gazette.com/news/health/2026/08/12/rare-disease-rk-mellon-pittsburgh/stories/202608120010
  4. Netflix. Matter of Time (2025), a documentary centered on Eddie Vedder’s benefit concert and the effort to develop treatments for epidermolysis bullosa. https://www.netflix.com/title/82184383

  5. Richard King Mellon Foundation. “Richard King Mellon Foundation Commits Up to $25 Million to Launch Rare Ventures, a First-of-its-Kind Platform for Accelerating Rare Disease Therapies.” August 12, 2026. This is probably the strongest primary reference for the initiative and its participating institutions, including Pitt, UPMC Children’s, and ElevateBio. https://www.rkmf.org/news-and-events/richard-king-mellon-foundation-commits-up-to-25-million-to-launch-rare-ventures-a-first-of-its-kind-platform-for-accelerating-rare-disease-therapies