Scientific Advisory Board Meeting February 20, 2021
Dan Lewis Foundation

12:00-1:45 EDT

Present: Sudhir Agrawal, Mark Bear, Graham Dempsey, Alan Kopin, Hal Lewis, David Margulies, Stephen Strittmatter

Unable to attend: Kevin Eggan, David Meaney

 

1.   H.L. presented a few DLF updates--

·      Two PowerPoint presentations have been developed--one for less scientifically oriented audience (“layman’s version”) and one for scientifically versed audience.

·      The BOD which met last Saturday (2/13) provided extensive feedback regarding the “layman’s version” with emphasis on making the presentation simpler, clearer, and shorter…thus, more impactful. Revisions now underway based on such feedback.

·      We are seeking input from SAB members re: the “scientific version” and will revise as needed per feedback received.

·      Eleanor Perfetto, Ph.D. (pharmacology) who has leadership roles in advocacy groups (in both TBI and Individualized Medicine) will be joining BOD in a few months.

·      We are open to adding members to the BOD and are interested in suggestions re: persons to invite. Suggestion made to seek BOD members connected to large advocacy organizations and to persons who are connected to significant funding sources.

·      The BOD discussed the nature of our RFP. Michael Crair suggested using the NIH RFP/Application format because it would be familiar to both applicants and to scoring panels.

 

2.   D.M. introduced the topic of clarifying the nature and scope of the foundation’s research priorities in order to provide focused strategies for fundraising and planful, targeted use of such funds.

·      S.A suggested consideration of a 3 stage model in which Stage 1 centers on discovery, Stage 2 centers on translational research, and Stage 3 centers on drug development. S.A. suggested that the DLF could allocate 1/3 of its funds to each of these stages initially and reconsider altering the apportionment as the research evolves

·      S.S suggested that open ended discovery might be prohibitively expensive given the relatively modest size of DLF

·      G.D. raised the question of identifying the most promising drugs currently in the pipeline

·      A.K. similarly asked what are the most promising compounds that could be launched if there was a critical mass of interest, focus, and research effort

·      M.B. cited the development of FraXa. Early on FraXa brought together a relatively small group of scientists who learned from each other and formed strong connections. This led to a great deal of momentum and progress in treatments for Fragile X syndrome.

·      D.M suggested that one parameter that we likely are in consensus is a focus on the chronic rather than the acute phase of TBI recovery. S.S. strongly agreed with this saying that in his view that focus on the chronic phase is much needed and presents great opportunities.

·      S.A. raised the example of research progress in treatment of Cystic Fibrosis. The pathway of discovery, to translational, to drug development has been quite successful and supported all along the way by strong advocacy efforts.

·      A.K. asked what specific deficits characterize Dan’s post-TBI status. H.L. cited Initiation, Motor Planning, and Cortical Visual Impairment as three prominent deficit areas. A.K. noted the diversity, in terms of deficit area, among the TBI population and wondered whether it might be advantageous to focus fundraising, research, and advocacy on a subset of TBI survivors.

·      Several members suggested using funds to “recruit” post-docs and early career faculty into research work in area of brain and CNS regeneration.

·      A.K. raised topic of robotics and electrical stimulation devices or implantations that may lead meaningful functional changes in lives of people with TBI or other neuromuscular disorders.

 

3.   Conferences

·      M.B. spoke of early days of FraXa and the strong connections that developed among central research figures. He raised possibility of convening 20 or so leaders/P.I.’s in the field over an extended period of time (3 or 4 times within a year?) to create a map for the way forward and an engine to propel progress. This group would include advanced investigators but not include post-docs or graduate students.

·      There was also discussion of a larger conference on TBI recovery that would focus on CNS recovery and brain regeneration in particular. A title suggested “Promoting Recovery from Chronic Neurological Damage”.

 

4.   Funding issues (both for conferences and research)

·      For conferences, outreach to pharma to seek funds is probably appropriate and ethical

·      For major funding (to use to fund research projects) the following sources were brought up:

  • Veteran’s Administration
  • National Football League
  • Automobile Companies
  • Large financial institutions
  • Other foundations with large endowments that might see value in our collaboration
  • National brain injury advocacy and information organizations
  • Individual/family benefactors


H.L and D.M. asked participants to forward to them any leads/contacts in any of the above categories.

 

Meeting was adjourned at 1:45.

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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