SPRING NEWSLETTER 2023
CONNECT COMMUNITY PARTNERS
“Following my traumatic brain injury and subsequent discharge from rehab, I had difficulty finding adequate services to meet my unique post-rehab needs,” says Candace Gantt, Founder and Executive Director of Mind Your Brain Foundation. “It was then I resolved to help survivors like me find the resources needed to help them recover as fully as possible and reach their highest potential.”
Mind Your Brain Foundation (MYBF) was established in 2015.
Since then MYBF has helped thousands of traumatic brain injury
(TBI) survivors and caregivers navigate services and access
valuable resources.
To date, MYBF has sponsored more than a dozen
conferences tailored to TBI survivors and their caregivers; they
offer a podcast that has reached over 7,000 listeners; and now
MYBF is “gamifying” rehab through virtual reality!
The foundation has supported two Research Fellows
who, in 2022, developed and completed testing on two mindful
meditation modules on ‘Oculus II’ that mirror outpatient
therapies. MYBF has completed its first round of clinical research,
the findings of which will be published this summer.
Since its earliest days, MYBF has worked closely with the
University of Pennsylvania Center for Brain Injury and Repair,
Penn Partners Medical Center, Good Shepherd Rehabilitation and
the Patient and Family Advisory Council (PFAC) at HUP. The
foundation partnered with PFAC to develop a Peer Mentorship
Program for caregivers of TBI survivors. MYBF is a member of the
highly respected National Traumatic Brain Injury Coalition. And in
2022, founder Candace Gantt joined CONNECT-TBI as a
community partner bringing patient perspective to the project.
“Participating in CONNECT-TBI has been insightful for me
in serving the TBI community and I am honored to serve as a
liaison to bring patient perspective to this important project,”
remarked Candace.
CONNECT-TBI CONTINUED PROGRESS
CONNECT-TBI continues to grow one of the most extensive brain
bank archives with a 10% increase in case holdings.
MIND YOUR BRAIN SERVES TBI
COMMUNITY WITH 8TH
ANNUAL CONFERENCE
On March 25, the Mind Your Brain Foundation hosted its 8th annual conference at Penn. Guests benefited from powerful stories, discovered resources, and heard about the latest research in TBI.
“For a long time, once a survivor completed the acute and rehabilitative stages of treatment, no coordinated system of appropriate services existed for the post-
rehab phase of their recovery” said MYBF Founder and Executive Director Candace Gantt. “Our foundation has been filling an important gap in the continuity of care for people with TBI.”
CONNECT-TBI MID-YEAR GENERAL ASSEMBLY
SPOTLIGHT ON...
Olamide Olatunji
Neuropathology
University of Pennsylvania
Olamide began his career at the University of Pennsylvania in January 2020. He studied at the University of Georgia and graduated with a B.S. in Biology prior to beginning his work in the Edward B. Lee Lab. At Penn, Olamide is furthering his training in neurodegeneration through a Certification in Neuroscience in Spring 2023. The Brain Bank Core operates like an international assembly line with Olamide Olatunji putting the final product together: receiving the brain tissue, staining, and baking the sections, and recording the inventory to make available for international tissue access.
Apply for tissue access here
WINTER NEWSLETTER 2022
Incredibly, this fall marked three years since the launch of the Collaborative Neuropathology NEtwork Characterizing ouTcomes of Traumatic Brain Injury (CONNECT-TBI). A frantic three years of team science activity that has resulted in remarkable successes for the program but has left us almost no time to update, take stock and reflect.
To address this lapse in communication, welcome to the first edition of CONNECT-TBI News!
Our story so far:
A sizeable collaboration from the outset, the CONNECT-TBI team, has now expanded to include over 30 investigators from more than a dozen prestigious research institutions across the globe that include experts in epidemiology, neurology, and neuropathology. Adding to our collective talent, NIH-NINDS Scientific Officer Hibah Awwad and Program Officer Nsini Umoh provide guidance and direct input, a unique benefit as a U54 Center Without Walls.
The overarching goal remains to map the neuropathology of traumatic brain injury related neuro- degeneration (TReND), including Alzheimer’s Disease and Alzheimer’s disease related disorders, while unlocking precious archives of human tissue samples for global research.
Fundamental to the project are the Brain Bank Core (BBC) and the Data Core (DC). The BBC has far outpaced initial goals with prospective case donations approaching 850 cases, with processing/ scanning over 160 cases.
This collection is not only important for CONNECT-TBI’s projects, but also serves as a key international resource for investigators.
Indeed, such has been the success of CONNECT that two and a half years before we had expected to be ‘open for business’ we are already supporting multiple international research applications. To date, 8 projects have been approved for tissue access, with multiple R01 applications carrying letters of support from CONNECT-TBI, 2 of which (so far) having successful awards.
For its part, alongside colleagues from wider research, the Data Coordinating Core (DCC) has had the daunting task of developing common data elements (CDEs) and unique data elements (UDEs) to be collected by the TBI research community, including our CONNECT-TBI archives. As with the BBC, the DCC will provide an unrivalled international research resource in TBI cases and controls.
Meanwhile, as if establishing a multi-center, multi- investigator research collaboration supporting global research activities in TBI wasn’t enough, CONNECT-TBI investigators managed to set some time aside to pursue field leading science. To date, an incredible 24 manuscripts have been published by team CONNECT, with many more in the pipeline.
CONNECT-TBI is proud of the numbers that detail its success, we invite researchers to apply for tissue access and we are eager to illuminate more fully the link of traumatic brain injury to Alzheimer’s disease, Alzheimer’s disease related disorders and other neurogenerative diseases.
Success by the numbers:
Institutions: 16
CONNECT COMMUNITY PARTNERS
CONNECT-TBI is passionate about not only furthering the frontier of brain injury research, but also in applying the results of this research to benefit patient and caregiver communities – our aim is to observe but also to empower those who’ve suffered a TBI to seek help in the places best suited to their experience. To assist us in this we have partnered with (patient representative) organizations Head for Change and Mind Your Brain Foundation (MYBF).
Head For Change is a charitable foundation advocating for better brain health in sport – they support former players who are affected by neurodegenerative disease as a result of a professional sporting career in soccer or rugby. They continue to do amazing work and recently they even presented to Downing Street!
For more information visit headforchange.org.uk or follow them on Twitter @Head4Change!
More about MYBF in our next issue!
THE BILLION POUND GAME
Part of our outreach with Head for Change recently involved the head of Glasgow Brain Injury Research Group (and Principal Investigator at CONNECT TBI), Dr Willie Stewart! On Sunday 25th September 2022, at Spennymoor FC, Head for Change organised the so-called ‘billion pound game’ completely devoid of heading the ball, aiming to spread awareness of the risks associated with the practice and to demonstrate that soccer without heading can work.
Prior to the match, Willie gave a talk on the link between heading the ball and dementia later in life. Willie then threw on his kit and stepped in as goalie for the following ‘header-less’ soccer game. The day was a big success and we hope to get involved with many more events in future to help raise awareness of these pressing issues; just don’t ask Willie what the final score was (he lost).
SPOTLIGHT ON...
HailongSong
PhD
University of Pennsylvania
Hailong’s CONNECT-TBI Tissue Access Project, Sodium Channels after concussion and TBI helped produce his “NaChO” manuscript Concussion leads to widespread axonal sodiumchannel loss and disruption of the node of Ranvier published in Acta Neuropathologica, June 2022
