Scientific Advisory Board Meeting August 5th, 2020
Dan Lewis Foundation

11:00-1:30 EST

Present:  David  Margulies (Moderator),  Hal  Lewis,  David  Meaney,  Mark  Bear,  Sudhir  Agrawal,  Stephen  Strittmatter,  Alan  Kopin,  Graham  Dempsey,  Kevin  Eggan,  Michael  Crair


--David Margulies opened the meeting with orienting remarks that provided a framework for the purpose and process of the meeting


--Several participants commented on the process of developing a foundation (for instance, FRAXA). There was discussion of how


successful foundations identify a niche and promote growth/momentum in various ways—fund postdocs to inject energy into an evolving research field, fund specifically targeted research, do advocacy work, link with other organizations/associations/foundations/government agencies.  Some participants offered the view that a hybrid model for growth of the Dan Lewis Foundation might be optimal.


--There was discussion about how best to categorize brain injury for purposes of intervention/outcome research. Acute vs. Chronic phase?  Severity of injury?   Pathophysiology of the injury? Targeted functions? Targeted neurological/neuropsychological deficits?


--There was general consensus that there is an abundance of research regarding medical approaches to limiting damage and preserving as much CNS integrity as possible during the acute phase following TBI. Conversely, there is a relative lack of research into medical approaches to regenerate CNS or to promote recovery of functioning during the chronic phase, especially in adults. Stephen Strittmatter noted that adults in the chronic phase of TBI recovery tend to have rather stable functional profiles while making slow, small functional gains. This may be seen as an advantage for doing small N outcome studies with chronic TBI subjects because even small accelerations in recovery of skills may be quite notable and significant. Hal Lewis agreed with this perspective based on observations of Dan’s consistent but painstakingly slow recovery.


--There was discussion of government agencies to which funding applications might be submitted. In particular, the general view was that both NIH and DOD  have not recently prioritized medical approaches to brain regeneration in adults in chronic phase of TBI. The group generally felt that this can be viewed as encouraging rather than discouraging as opportunities are present.


--There was discussion about whether there are any pharmaceutical companies that are investing in TBI products. Stephen Strittmatter said that pharma has generally been disappointed by attempts to research/manufacture meds for post-stroke patients which may have led to reluctance to pursue drugs for TBI. Participants were not aware of any pharm companies that are invested in TBI.


--Sudhir Agrawal brought up the need for a better understanding of the natural history/course of moderate/severe brain injury. He and others spoke of the potential value of a repository of the biomarkers of TBI over time.


--There was extensive discussion of cortical blindness (or what might better be called “cerebral visual impairment) as a possible starting target for the Foundation. Positives factors for choosing this target include: existing animal research, pharmacological intervention studies with animals have been done in regards to amblyopia and cortical blindness, outcome studies could likely be fairly easy to design, positive results (if obtained) could likely provide a template that could be transferred to other CNS circuits/functions. There was a consensus forming that this could be a good area to get started.


--There is some existing evidence that down regulation of Lynx1 gene can lead to modulation of inhibition of plasticity in the visual cortex thus leading to improvement in cerebral visual impairment.


--Michael Crair took a few minutes to introduce himself as he is new to Scientific Advisory Board.


--Hal Lewis announced that the Board of Directors, which has not yet met formally, will be meeting in 6-8 weeks with following topics for discussion:

1) Presentation of the Foundation’s proposed by-laws followed by discussion and vote on ratification of by-laws

2) Ways of funding the foundation’s research agenda

3) Connecting with other foundations, advocacy organizations

4) Ensuring good communication between the Board of Directors and the Scientific Advisory Board


--David Margulies took a few minutes to summarize today’s discussion, to initiate discussion of next steps, and to propose that he will distill today’s discussion into a document that provides greater specificity to the Foundation’s initial research agenda. This document will be distributed to the Scientific Advisory Board in draft form around the beginning of September and comments, edits, suggested inclusions/exclusions will be solicited. Hopefully, when the plan is consolidated it will, via the Foundation website and also a PowerPoint presentation, provide a platform for various types of fund raising. David also encouraged all participants to forward questions/comments/suggestions etc. at any time, including before the draft research agenda is distributed. 

A man is holding a fish in his hand in front of a lake.

Devon’s Journey – Two Years Post-Accident

By Dan Lewis Foundation • November 6, 2024
After a life-altering accident in October 2022, Devon Guffey’s story is about resilience and determination. His journey has been profiled in the summer 2023 issue of the Making Headway Newsletter: https://www.danlewisfoundation.org/devons-story . Hit by a drunk driver, Devon sustained severe brain and physical injuries, including axonal shearing, a traumatic frontal lobe injury, and facial fractures. Even after contracting meningitis while in a coma, Devon fought hard to survive – and today, his recovery continues to inspire us all. In late 2023, Devon worked as an assistant basketball coach at Blue River Valley, where he had once been a student. His love for sports and dedication to regaining his physical strength returned him to the gym, where his hard work paid off. Devon’s persistence earned him another job at the YMCA, guiding gym members and supporting facility upkeep. Through all the challenges—deafness in one ear, blindness in one eye, and a permanent loss of taste and smell—Devon perseveres. He recently regained his driving license, a significant milestone that symbolizes his increasing independence and cognitive and physical recovery. While each day may not show significant changes, Devon now sees his progress over time. Today, Devon speaks to groups about his journey, the dangers of drunk driving, and finding strength in adversity. His message is clear: recovery is a process, and sometimes, "can't" simply means "can't do it yet ." Every TBI is unique, and Devon’s story powerfully reminds us of the strength that comes from resilience and community. We are grateful to Devon for continuing to share his story and for his role in uplifting others facing difficult paths. His journey is a testament to the fact that we are stronger together. #BrainInjuryAwareness #DevonsJourney #Resilience #EndDrunkDriving #MakingHeadway
A close up of a brain with a lot of cells and a purple background.

Advancing Brain Regeneration Therapies

By Dan Lewis Foundation | Summer 2024 • July 10, 2024
Scientists worldwide are working to find ways to stimulate healing and functional recovery after severe brain injuries. This work is driven by the desperate needs of persons who have suffered brain damage. It is inspired by the knowledge that the information required to create new brain cells, cause these cells to interconnect, and stimulate new learning is contained in our genome. Now that we can readily generate stem cells from adult tissue, we have access to the genomic program that can control all of the intricate details of brain tissue formation. A number of different research themes are being pursued productively. These include: (1) enabling injured neurons to self-repair (“axonal repair”) 1,2 ; (2) replacing damaged tissue by increasing the growth of new neurons (“neurogenesis”) 3-5 ; (3) transplanting new brain cells that are derived from a person’s own stem cells (“autologous cellular repletion”) 6-8 ; (4) stimulating the re-wiring of new or surviving tissue by encouraging the formation of new connections (“synaptogenesis”) 9,10 ; and (5) augmenting the function of a damaged brain by the use of bio-computational prostheses (“brain-computer interfaces”) 11,12 ; We’ve explored these themes in previous newsletters. The goal of stimulating meaningful brain regeneration is now sufficiently plausible that a large-scale, well-funded campaign needs to be funded to bring meaningful new therapies to patients within the foreseeable future. Here, we suggest a high-level outline of the research themes for such a campaign. A ‘moon shot’ program towards brain regeneration would leverage cutting-edge technologies in stem cell research, gene therapy, synaptic plasticity, neuronal repair, and brain-computer interfaces (BCIs) to develop innovative treatments for brain injuries and neurodegenerative diseases. These treatments would target the restoration of lost brain functions and improvement in the quality of life for individuals affected by severe brain injuries. This research agenda aims to catalyze serious discussion about creating a federal program with funding, organizational resources, and expert governance to enable brain regeneration in our lifetimes. Major Themes For a Brain Regeneration “Moon Shot” Program 1: Promote the formation of new neurons 1.1 Stimulate the brain to create new neurons 1.2 Create new neurons from patient-derived induced pluripotent stem cells to be transplanted back into the patient. Create new glial cells to support neurogenesis. 2: Stimulate new synaptic formation 2.1 Develop drugs that enhance synaptic plasticity and promote the formation of new synaptic connections 3: Stimulate self-repair of damaged neurons 3.1 Develop drugs that de-repress neurons and, thereby, enable axonal regrowth 4: Develop brain-computer interfaces (BCIs) for brain-injured patients 4.1: Develop and test BCIs that enable the brain to control behaviors or external devices and, thereby, augment or replace impaired functions. 4.2: Develop and test BCIs that can accelerate the training of remapped brain tissue in persons with brain injuries to optimize functional recovery. 4.3: Combine BCIs with other strategies (e.g., cell repletion, synaptogenesis, and enhanced plasticity) to accelerate adaptation and functional improvement. The proposed research themes can underpin targeted research to stimulate meaningful brain regeneration, offering new hope for patients with brain injuries and neurodegenerative diseases. While the scientific challenges are profound, there has been sufficient progress to justify substantial investment in brain regeneration research. Any such large-scale program will require coordinated collaborations among academic and commercial partners, skillful governance and management, and a shared sense of profound commitment to the goal. The recent pace of advances in cell biology, stem cell technology, bio-computational interfaces, and genomically targeting medicines suggests that large-scale investment will yield meaningful clinical advances toward brain regeneration after injury. With robust funding and skilled leadership, this comprehensive research agenda has a realistic potential to transform scientific breakthroughs into tangible medical therapies, offering hope to millions affected by brain damage.
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