A message from our CEO.
We started 2020 with a bang by sharing our first community needs survey and holding a strategic planning meeting to frame our next five years of impact. And then .. boom. For the first time in recent history the rest of the world experienced fears and uncertainty similar to what our families face every day.
This annual report lays out how we were able to pivot quickly in response to the COVID19 pandemic and create a framework that addressed immediate and emerging concerns. Despite the many challenges we experienced, we continued to inspire research, build resources, provide information, and create support networks for the families we serve. Several of our research projects were published in respected, peer-reviewed medical journals, we developed new programs, and refined our mission to align with our community’s needs.
My profound gratitude once again goes to our team who work tirelessly to move our mission forward while caring for children, aging parents, and managing school shutdowns; to our community advisory council whom I look to for guidance and advice; and to and our scientific advisory board for helping me navigate our critical research initiatives.
With you, we remain relentlessly dedicated to helping children reach their full potential after epilepsy surgery.
Always in hope,
Monika Jones, CEO
Facing Trying Times
HOW WE RESPONDED TO COVID19
Coronavirus Response and Resources.
As soon as the pandemic hit, we quickly responded by asking our community to share their fears and concerns about how the novel virus might impact their child. We then consulted with experts in various medical fields and created a dedicated web page to address very specific questions about COVID and epilepsy surgery. This page includes content from our advocacy partners including the Epilepsy Foundation, the Child Neurology Foundation, and DEE-P Connections.
As months of school shutdowns progressed, our parents and caregivers needed assistance navigating school closures and distance learning. And we quickly learned that many of our parents, caregivers, and self-advocates would benefit from mental health resources within our trusted network.
Community Check Ins.
With the support of a licensed clinical social worker, Community Check-ins became a place where parents could simply get together and vent about the stressors and limitations of COVID. One parent called in from the hospital bedside of her son who had just had hemispherectomy surgery. Here’s her story:
Our son Everett had a left functional hemispherectomy in April 2020. Due to the restrictions that were in place to slow the spread of a relatively new (at the time) pandemic, only one parent was allowed to be in the hospital and we were not allowed to switch places.
Navigating through the early days after your child’s major brain surgery is difficult under normal circumstances and facing these days alone was not only difficult but also incredibly isolating. It was during the first week after Everett’s surgery, when he was still in the PICU, that I was invited to a virtual parent support group meeting hosted by The Brain Recovery Project. Being able to participate in this virtual support group and being surrounded, even if just through a computer screen, by a community of parents who had all faced exactly what I was facing at the time was a support like I had never experienced before.
Even though I was physically alone in that hospital room, the community that surrounded me in that moment was a lifeline and a safe place where I was able to ask the hard questions, express a wide array of emotions and listen to other families’ experiences with similar surgeries and recoveries. My family and I are forever grateful for The Brain Recovery Project and the abundance of support that they provide to the epilepsy surgery community.
Therapy and Service Issues.
The Childhood Neurology Foundation hosted an informative webinar that featured our Executive Director Monika Jones and Denise Marshall, Executive Director of the Council of Parent Attorneys and Advocates. They discussed lack of access to services that therapists formerly provided in schools, and how the pandemic impacted access to special education services for children with disabilities..
Finding Balance Between Work and Home.
Finding Balance Between Work and Home During Covid19 was a supportive presentation in collaboration with Global Genes. Joined by Shelley Bowen, Director of Family Services & Advocacy for the Barth Syndrome Foundation, we discussed the inherent challenges in working from home, school shutdowns, and caregiving.
Meeting Financial Need.
The Brain Recovery Project created two unique programs to support community members overcome by financial stressors from the rapidly changing economy. As the world came to a halt, the Abel Family generously released funds from the Dreams for Danny – Surgical Evaluation Travel Scholarship to seed our COVID19 Emergency Assistance Fund micro-grant. Along with our new Community Care Grant, funded by an award from Global Genes, we helped cover medical costs, address educational access and contributed to providing for the basic needs of many struggling community members. We gave $500 each to 48 families in our pediatric epilepsy surgery community to assist with continuity of education, medical care, and basic needs
Engaging Our Community
Global Pediatric Epilepsy Surgery Registry.
In its second year, the Global Pediatric Epilepsy Surgery Registry is a vital, patient-powered registry that captures data and outcomes of more than 120 children who have had hemispherectomy or other surgeries, and has flourished as a centralized tool where families share their experiences in a structured, meaningful way.
The collective data aids parents, clinicians and researchers in finding answers to important questions, while bringing previously unidentified challenges to light. This centralized tool has already been used by researchers and doctors to benchmark surgical outcomes beyond seizure control, leading to new and exciting discoveries for our children.
Listening To You.
Community Perspectives is an invaluable report which highlighted the results of our Community Needs Assessment Survey. By listening to the voice of our community, their needs, challenges, and feedback about what we do, the results will help shape our future research and program offerings, to ensure they have a meaningful impact on our community’s quality of life.
Our Strategic Plan.
Created in January of 2020 at an in-person meeting in Chicago that included our board, staff, key volunteers, representatives from our community advisory council and scientific advisory board, our Strategic Plan gives sharp focus to our work by defining impact objectives driven by our community’s needs and priorities. It requires us to rethink how we organize our time and talent, as well as where we invest donations, and what research we fund. By focusing on what will bring high impact quality of life improvement for the community we serve, our new strategic plan will ensure that we are helping children reach their full potential after brain surgery to stop seizures.
Awareness and Engagement
Our awareness campaigns provided critical information to our growing community of stakeholders. engaged a broader community and expanded our network of stakeholders. We empowered our existing community with both new and confirming information and research.
Let’s Talk About Epilepsy Surgery.
Our new series Let’s Talk About Epilepsy Surgery, launched as a navigational guide through a child’s epilepsy surgery journey, was met with unprecedented viewership. This accessible, informational webinar series featured high level clinicians and caregivers providing a navigational guide through a child’s epilepsy surgery journey. It provides an overview of the barriers to surgery, pre-surgical evaluations needed, and treatment options – arming parents with the knowledge they need to make an informed healthcare decision for their child.
You Tube Views
For the third year in a row, we received a Gold Seal of Transparency from GuideStar. This recognition shows our commitment to financial and programmatic transparency, giving champions like you the information you need to make educated decisions around supporting our work.
SUPPORT AND REVENUE
In Kind & Other
Programs and Research
Fundraising and Development
General and Administrative
TRANSPARENCY AND ACCOUNTABILITY
We help children reach their full potential after epilepsy surgery.
A world where all children after epilepsy surgery have the opportunity for a high quality of life, including an appropriate education, gainful employment, meaningful social opportunities, and good health to the maximum extent possible regardless of where they are on the spectrum of outcomes.