This Thanksgiving, we’re especially grateful for the community of champions who share our resources and support what we do. They help us raise awareness about pediatric epilepsy surgery and fuel our programs for children after surgery – like our patient and family conferences and our exhaustive guides and special education resources. When COVID19 hit, these champions shared our information about the pandemic, including our financial aid programs which provided over $25,000 in funds to families in need of iPads, computers, WiFi, and other support to help their children access remote learning or travel to a hospital for a surgical evaluation.
November kicks off our annual giving campaign, where our community raises funds through the end of the year to support our work. In just three weeks, our families have helped raise over $8700 for our programs through peer-to-peer fundraisers on Facebook. Our deepest gratitude to these supporters who share how we’ve helped them navigate the epilepsy surgery journey.
Meet the Hausers
Justin and Erica Hauser’s youngest daughter had a right hemispherectomy at the age of 4 in an effort to stop or reduce her seizures. Erica and Justin turn to The Brain Recovery Project not just for research-based information, but for community as well.
Erica shares that “there is so much that goes into the planning for a surgery of this kind with your child’s medical team. However, there is not a medical professional out there that can really tell you what to expect and how to navigate life with your child after a hemispherectomy. The Brain Recovery Project was a much needed resource that came into our lives at just the right time to help our family when we had so many questions about how to navigate life after such a major surgery. From IEP planning, educational team training, questions about rehab therapies, adaptive equipment, suggestions on what to do if seizures return, the wealth of resources and knowledge shared at the pediatric conferences, the awareness of the latest technology available to assist our children and make their lives easier and much much more! But best of all is being a part of a community of other families that get it.”
In just a few weeks, the Hausers have raised $3,600 and counting to support our programs though their Facebook peer-to-peer campaign. By sharing their daughter’s powerful epilepsy surgery journey, they are giving back by being champions for the children we serve.
If you want to make a powerful impact for the children we serve, you can start your own fundraiser today.
about the author
Monika Jones, JD, is our founder and executive director. Her first son, Henry, had a modified lateral hemispherotomy, revision surgery, then true anatomical hemispherectomy to stop seizures caused by total hemimegalencephaly. She is also the principal investigator of the Global Pediatric Epilepsy Surgery Registry, the only parent-reported data collection to understand the developmental trajectory after pediatric epilepsy surgery. You can read her research works at orcid.org/0000-0001-6086-3236.
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