“I’m excited to expand my work with the Brain Recovery Project, taking on the role of board chair. The name change coming this fall to Pediatric Epilepsy Surgery Alliance provides a very clear definition of what this organization does and who they serve, and will be a launching point for future growth.
Since joining the board in 2017 as secretary, I’ve seen the organization make incredible progress. They hold biennial family conferences, a massive effort that brings families together with HCPs and industry for learning, idea exchange and support. They launched a patient registry and published research in Epilepsia, the premier epilepsy medical journal.
BRP has also created a peer mentor program that is 24 people strong – all of whom have a child whose had brain surgery and all of whom have gone through a rigorous training program so that they can be balanced, accurate and supportive for people who call amid some of the most difficult circumstances a parent could imagine. That is just a few of the highlights; the depth of activity driven by a small group on a tight budget at BRP is astounding.
As board chair, I’m excited to play an expanded role in driving BRP’s mission forward, continuing the great work led by the previous board chair, Luke Shepard. Our goal is to grow funding and support that is needed to further expand and sustain the BRP’s mission.”
Board chair Luke Shepard completes his term
Last week we said farewell to our outgoing board chair, Luke Shepard. Since 2013, Luke has tirelessly dedicated his time and energy to The Brain Recovery Project. As board chair, he brought best practices to the organization, including instituting term limits for directors in 2021.
Luke shares his thoughts as outgoing chair and his hopes for the organization:
“I’ve been honored to serve on the board of the Brain Recovery Project over the last decade. I first learned about the organization shortly after my daughter had her first seizure, and Monika Jones, Audrey Vernick, and the entire team has been with us every step of the way – through many seizures, her surgery, and then years of IEP meetings as our daughter has grown up.
It’s been particularly great seeing the organization grow and mature into a top-tier professional team that drives forward new research. This fall, we are changing our name – no longer just a “project”, the Pediatric Epilepsy Surgery Alliance* is a community of all the most knowledgeable researchers, clinicians, and especially parents and patients who work together to find the best way to help kids achieve their full potential before and following brain surgery.
The new name speaks of the power of everyone working together across institutions and around the world to learn about the complexities of human brain development and apply it to help our children grow.
As the organization has grown, so too has the board. In the last few years we have recruited a new slate of extremely talented and impressive directors to entirely replace the founding team. Our new chair is Matt Flesch. He runs fundraisers, gives sage advice in our meetings, and has devoted hours to help spread the word about the work among industry. I am excited to see the evolution of the board under his leadership.
New members appointed to the board
Two new directors were elected to the board of directors at its annual meeting last week: Mary Venick and Emily Nicoli.
Mary Vernick is a retired IBM executive with experience developing and managing software products. Her last position with IBM was in business re-engineering consulting for IBM clients. She has served on seven boards, founded two non-profit organizations, served as board president twice and secretary twice.
Her daughter-in-law is Audrey Vernick, who is the Director of Patient and Family Advocacy at the Brain Recovery Project. Audrey’s 18-year-old son had a hemispherectomy at age 3. Mary has had years of exposure to the challenges and resources needed by children with brain surgery to stop seizures.
Vernick has raised pledges of several million dollars for the construction of a community center, including outreach from wealthy donors as well as hundreds of pledges from the community at large. Her fundraising experience and personal connection to the organization will be equally valuable and impactful as the organization grows.
Emily Nicoli is a certified Nurse Practitioner and Chief Nursing Officer at UnitedHealthcare Retiree Solutions, where she oversees their clinical programs and budgets for Medicare Advantage members. She has previously cared extensively for patients with brain injuries due to trauma or surgery and brings a wealth of experience working with brain surgery and budgets within the health care system.
Nicoli also has a 3 year old son with genetic epilepsy who has had epilepsy surgeries. She is a talented public speaker – she will be speaking in November for a CHOP webinar meant to be a QA for parents exploring surgical options. She has also been asked to speak at the American Epilepsy Society meeting in December on the parent’s perspective of genetic epilepsy and related surgeries.
2022 – 2023 Board of Directors
Board chair: Matt Flesch, Horizon Therapeutics
Secretary: Mary Vernick, former IBM executive
Treasurer: Emily Nicoli, United Healthcare Retiree Solutions
Member: Sandi Lam, MD, Ann and Robert H. Lurie Children’s Hospital
Member: Cecile Dame, PhD MPR Associates
Member: Nicole Murray, Epilepsy Foundation
Member emeritus: Gary Mathern, MD, UCLA Mattel Children’s Hospital