Previewing the research sessions at Reeve Summit 2020

Posted by Ethan Perlstein in Research News on January 29, 2020 # Research, Reeve Summit

Next month the Reeve Summit 2020 will convene in Washington DC from February 26-28th and feature engaging speakers and interactive panel discussions on topics spanning the care-cure continuum. My colleagues at the Reeve Foundation have started to blog about the keynote addresses and care-focused sessions so I’d like to take a similar opportunity here to preview three of the research-focused sessions.

On Thursday February 27th in the morning, the Director of the Division of Neuroscience in Extramural Programs at NINDS, Dr. Lyn Jakeman, will give a presentation entitled “State of Spinal Cord Injury Research” that will combine a historical overview and contemporary assessment. Dr. Jakeman has decades of experience as program director with a focus on the areas of peripheral nerve injury and axonal regeneration; is an advocate for other scientists in SCI; and is a champion of people living with the injury. For those who didn’t attend the SCI 2020 conference hosted at NIH last February, Reeve Summit 2020 participants can expect a recap of those proceedings as well progress made in the 12 months since.

On Friday February 28th in the morning, I will moderate a panel discussion entitled “Imagining a world without SCI” with Dr. Ann Parr, MD/PhD at Mayo Clinic, and Dr. Rebecca Martin at Kennedy-Krieger Institute. Dr. Ann Parr brings a regenerative medicine perspective that will be a key plank of the SCI Cure Roadmap. Dr. Rebecca Martin brings the rehab/physical therapy perspective that informs clinical practice on the ground. I will pose scientifically provocative questions to Drs Parr and Martin in the hopes of stimulating an honest and multilateral conversation that includes diverse audience participation.

In the early afternoon, I will give a keynote address entitled “The Future of SCI Research.” You almost always hear people say that there won’t be a magic bullet for SCI, and that a combination of complementary, incremental but increasingly curative treatments will ultimately sum up to a cure -- or more likely a menu of combinatorial cure packages customized to order for each person and his or her N-of-1 injury. So how do we get there in a coordinated, egoless fashion as a global community? And how do we make curing SCI investable over the long haul so that sustained funding takes us across the finish line?

Multi-year, modality agnostic, modality combining, cure-focused research plans are called Roadmaps. Our friends at ISRT published a Roadmap-like document in 2007, and it serves as the intellectual foundation for this scaled up effort over a decade later. Here’s an example of an online but static Roadmap that was produced by the Rett Syndrome Research Trust, but one can imagine how an online, interactive and dynamic Roadmap for SCI will actually be more like Google Maps, which will allow for zooming into a particular therapeutic modality or into a specific level of injury.

I will use my keynote to present the benchmark venture philanthropy case study of the Cystic Fibrosis Foundation, describe how other disease groups like Juvenile Diabetes Research Foundation and Multiple Myeloma Research Foundation have molded venture philanthropy to their community needs, and then outline how a strategy of diplomacy and buy-in will work to assemble a geographically borderless grand alliance for SCI with a unified cure-focused research agenda.

Please join us in DC at the end of February!


Join Ethan and many other key thought leaders at the Reeve Summit 2020: Where Care, Cure and Community Connect, held in Washington D.C. on February 26-28, 2020. Click here to register for the conference.

Any questions about the conference should be addressed to [email protected].

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.