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 gold trophy with a laurel wreath around it.

Announcing the 2025 DLF Prize

By Dan Lewis Foundation • April 2, 2025
For the third consecutive year, the Dan Lewis Foundation for Brain Regeneration is proud to announce the DLF Prize competition. The 2025 DLF Prize, a $20,000 award, will recognize an outstanding early career scientist (2 to 5 years post-doc) conducting innovative research in neuroscience, pharmacology, or biotechnology. This prestigious prize honors researchers whose work aligns with the DLF mission to drive breakthroughs in neural regeneration and repair. The current research priorities of the DLF are: Pharmacological Reactivation of Neural Repair: Research into pharmacological methods of reactivating or augmenting synaptogenesis, neurogenesis or axonal repair. Cell-Based Cortical Repair: Investigating the potential of derived cortical neurons to restore function in damaged cortical regions. Transcriptomics of Neural Recovery: Characterizing transcriptomic profiles of cortical neurons in the recovery phase following brain injury to identify pathways that drive repair. Molecular Inhibitor Targeting: Advancing anti-sense oligonucleotides (ASO’s) or small-molecule therapeutics designed to downregulate inhibitors of neural regeneration in the cortex or spinal cord. Application for the 2025 DLF Prize can be made by going to our website— danlewisfoundation.org —and clicking on the Tab “ 2025 DLF Prize ”. This will bring you into the application portal. The application portal opened in March, 2025 and will remain open through May 31st. Once in the portal, you will find complete information about the DLF prize, eligibility requirements, and an application form which can be filled in and submitted online. The winner of the 2023 DLF Prize, Dr. Roy Maimon, continues his research indicating that downregulation of PTBP1, an RNA-binding protein, can convert glial cells into neurons in the adult brain (Maimon et al. 2024) .* Dr. Maimon, currently a post-doc at the University of California, San Diego is currently interviewing for a faculty position at several prominent neuroscience departments. The winner of the 2024 DLF Prize, Dr. William Zeiger is a physician-scientist in the Department of Neurology, Movement Disorders Division, at UCLA. Dr. Zeiger has expertise in interrogating neural circuits using a classic “lesional neurology” approach. He states, “Our lab remains focused on understanding how neural circuits become dysfunctional after lesions to the cortex and on investigating novel circuit-based approaches to reactivate and restore damaged cortex”. * Maimon, Roy, Carlos Chillon-Marinas, Sonia Vazquez-Sanchez, Colin Kern, Kresna Jenie, Kseniya Malukhina, Stephen Moore, et al. 2024. “Re-Activation of Neurogenic Niches in Aging Brain.” BioRxiv. https://doi.org/10.1101/2024.01.27.575940.

Alan’s Story

By Dan Lewis Foundation • April 2, 2025
Alan was injured in 2021, at age 42. An art teacher in Lakewood, Colorado, Alan was riding his bicycle after school and was crossing at an intersection when a truck turned into the crosswalk area and hit him. Alan reports no memory of the event but has been told this is what happened. Alan says “My frontal lobe took the brunt of the impact, particularly the left frontal lobe”. Alan had a 2 ½ week stay at a nearby hospital where he, “re-learned to talk, to walk, and drink”-- although again he reports no memory of his stay there. Alan was then transferred to Craig Rehabilitation Hospital, in Englewood, Colorado. Alan says, “The only reason I knew I was at Craig is that I rolled over in bed and saw “Welcome to Craig” on the dry erase board.” During this stage of recovering, Alan repeatedly denied that he had been in an accident. Twice he tried to leave Craig on his own accord despite his wife’s and his therapists’ assurances that it was important for him to stay to recuperate from his injuries. Alan’s wife was 8 months pregnant at the time of his accident and gave birth to their son while Alan was an inpatient at Craig. Alan’s wife brought his newborn son to visit him days after the birth and Alan held him while sitting in his wheelchair, but Alan wistfully reports this is another thing he can’t remember. Alan reports that he still has significant difficulties with memory. Alan has also experienced several other neuropsychological difficulties. He states that for months after his injury, he could not experience emotion. “I could not laugh, I couldn’t cry.” Even after three years, his emotional experience is constricted. However, an emotion that is sometimes elevated is irritation and anger. Sometimes, dealing with people can be difficult because he may have temper flare-ups with little reason. This is something that Alan regrets and he is working hard with his neuropsychologist to improve the regulation of his emotions. Alan also has difficulty with organization, motivation, and distractibility. Earlier in his recovery, he had trouble sequencing and had difficulty carrying out personal and household routines. Alan has benefited greatly from therapy and his own hard work to make improvements in these areas. A chief reason that Alan works so hard in his recovery is so that he can be a good father to his son who is now almost 3 years old. He recognizes that it is important not to get frustrated when it seems that he can’t provide what his son wants or needs at a given moment. “I’m trying to raise my son the best I can…he’s at such a pivotal time in his life.” Alan’s financial situation was helped for a time by Social Security Disability Insurance payments but these payments ended. He is trying to get SSDI reinstated but the process of doing so is confusing and is taking a lot of time. Alan returned to work about 11 months ago at a liquor store (after about 2 years of not being able to work), the same store where he previously worked part time while teaching. He works in the wine department. “I sell wine and make recommendations.” When asked for advice to other brain injury survivors, Alan’s words were: “No matter how confused or upset you are or how frustrated you get, keep pressing on and moving forward because there is light at the end of the tunnel even though it may seem long. Keep moving forward and don’t give up no matter what anyone says to you”. Alan added that supports for individuals with brain injury are very important. He has found support groups, retreats, and seminars/events where brain injury survivors can share their experience to be very helpful. The volunteer work he does at Craig Hospital has been valuable for him. Alan is an inspiring individual. Despite having scarce memory of his accident and some confusion about the functional losses he has experienced, Alan has worked hard to make his recovery as complete as possible. He continues to work hard to progress and to express gratitude for those who have assisted him along the way.