26 parents and caregivers received $1,000 each in financial aid
A significant obstacle to accessing epilepsy surgery is the financial burden incurred from traveling to specialized epilepsy centers for surgical evaluations, as these travel expenses are typically not covered by insurance. However, through the generous contributions of our supporters, we were able to offer hope to 26 children in 2023, helping to alleviate this financial barrier and bringing them one step closer to potentially life-changing surgery.
Fiadh’s seizures returned after resection surgery. Her parents relied on our surgical evaluation travel scholarship to help get Fiadh to a surgical center in Boston to see if she’s a candidate for a second surgery. “Leaving the state to seek medical opinions is not something I ever thought we would have to do, but without the support and funding from the Alliance, we would literally be lost. Parents shouldn’t have to worry about finances when trying to help their kids medically, and the funding is a huge help to families like ours.”
Over 200 parents and caregivers received 1:1 support from our parent support navigators.
Our trained and certified parent and caregiver support navigators speak English, Spanish, French, Portuguese, Hindi, and Farsi. They help parents and caregivers navigate the many emotions and questions about epilepsy surgery.
“After our phone call, I felt more centered and left with some notes for my next steps. I was feeling overwhelmed with not doing “enough”. I also wanted to be aware of any programs or resources that I wasn’t already tapping into. It was very informative and helpful.”
“I’m a grandma trying desperately to keep my granddaughter safe, getting a free and appropriate public education, and just being mentally and physically healthy. I am on a five year battle with her school and trying to educate them, her parents, and myself on just how important safety is for her. Thanks to Audrey and the Alliance I am able to provide a more accurate and detailed argument for better services for her. Audrey has provided me with moral support, educational material, and just a shoulder to lean on through everything. I appreciate her so much.”
Over 400 staff from 60 school districts were trained in outcomes after epilepsy surgery and how to help a child learn and thrive.
Some epilepsy surgeries can impact how a child sees, hears, and learns. With knowledge about cognitive, behavioral, and physical challenges, teachers can modify their teaching strategies to better suit the learning styles and needs of these students.
This was excellent! I cannot begin to express my appreciation for the information you shared with us. The presentation was incredibly informative and timely for the team. Since I found numerous items “useful,” I cannot imagine where anyone walked away not learning a great deal about our student. We still have much work ahead of us. I will be happy to send the link to the survey to the training participants and will save the Zoom recording. It will be valuable to have moving forward.
25 webinars and workshops recorded to help families navigate learning and life after surgery.
For most of the families in our community, surgery is just one part of the journey. Our webinars and workshops covered topics from living with a sibling with special needs to navigating complicated financial assistance programs. Hundreds of families participated in our workshops and watched our webinars in 2023. All can be viewed on our YouTube channel.
Thank you so much for such a great and informative presentation! Always super helpful and amazing. The presentation is spot on with how we react differently within a family and how much this impacts the sibling of the special needs child as well as parents.
Dr. Taylor Abel, Chief of Pediatric Epilepsy Surgery at UPMC Children’s Hospital of Pittsburgh, presents early data from our Global Pediatric Epilepsy Surgery Registry to his colleagues at our science and research update.
We held our first science and research update for doctors about outcomes after hemispheric surgery.
This meeting was a crucial opportunity for neurologists, neurosurgeons, and aligned professionals to learn from parents’ firsthand experiences about the long-term outcomes following hemispherectomy surgery. By sharing your child’s journey in our Global Pediatric Epilepsy Surgery Registry, you shed light on the surgery’s effects that may not be immediately evident to healthcare professionals. This knowledge is indispensable for neurologists and neurosurgeons, as it will significantly enhance their ability to tailor future treatment plans. This was not just a meeting; it’s a pivotal step in advancing pediatric neurological care.
I really enjoyed the presentation and will definitely expand our pre-hemispherotomy evaluation and counseling based upon the recommendation made at your meeting.
This year in review is just a taste of what we did in 2023 thanks to your support. 2024 will bring us our Family and Research Conference, where we convene renowned researchers and clinicians with our families to learn, drive research, and find community.
It’s also when we’ll launch our next groundbreaking initiative: developing medical guidelines for symptom surveillance after hemispheric surgery. This initiative will significantly enhance the quality of post-surgical care and monitoring for children after hemispheric surgeries.
Your donations make this possible and I look forward to keeping you informed about our progress. Thank you for being part of this transformative journey.
Always in hope,
Founder and Executive Director
With my son after his functional hemispherectomy at three months old in 2007.