Tips for providing comments
- Don’t be intimidated! Your child’s epilepsy surgery journey matters. Tell your story as it relates to one of the benchmark areas.
- Comment in your own voice. You don’t need to use medical terminology. Authentic comments are welcome and needed.
- Be genuine. What’s missing from the benchmarks? Is there an area that should be rewritten?
Two of the benchmark areas include epilepsy surgery. We encourage you to comment about these benchmarks and engage in discussions with other commenters about the importance of the benchmark to your family and our community.
Area III …. 4. Identify, develop, and improve pharmacological, surgical, genetic, epigenetic, neuromodulatory, dietary interventions and devices to detect, predict, or terminate seizures and other epilepsy-related health risks while minimizing adverse effects.
Area IV ….. 2. Understand and limit the impact of anti-seizure treatments (medical, surgical, and other interventions) on non-seizure outcomes, such as neurodevelopment, mental health, cognition, health-related quality of life, and other functions.
Last year, we held a research meeting where we discussed the massive gaps in functional outcomes research after large pediatric epilepsy surgeries. At the end of the meeting, we decided there were three main research areas that needed to be addressed:
- Understanding postoperative hydrocephalus;
- Understanding post-surgical mental health issues; and,
- Understanding and improving literacy after surgery and other educational interventions.
We encourage to comment about the benchmarks and the research areas above. For example, if your child experienced hydrocephalus after hemispherectomy, you might write about your the diagnostic journey to hydrocephalus, success or failure of treatments, and how hydrocephalus has impacted your child, and encourage more research funding in this area.
If your child has experienced mental health issues after surgery, share your story in support of the benchmarks to encourage more funding in that area.
You can also suggest that the benchmark be rewritten. For example, should the benchmark be clarified to list educational outcomes? Why is that important to you?
Do you need help?
- The DEE-P Initiative has a detailed, one-hour video about the benchmarks and how to comment here. We encourage you to watch the whole video to take a “deep dive” and understand the benchmarks and the importance of your comments. Specific instructions on how to use the crowdsourcing platform and comment on the benchmarks starts at minute 20:00.
- Our advocacy partners at the Dravet Syndrome Foundation have prepared helpful instructions on how to join the crowdsourcing platform and provide comments here;
- Feel free to set up a time for us to walk you through the process and provide you with any assistance you might need to provide comments. You can schedule a time here: https://calendly.com/thebrp/30min.
The National Institutes of Neurological Disorders and Stroke has launched a second campaign to collect input around transformative ideas around epilepsy research. We’ll publish a blog post soon about how you can advocate for big change by providing your transformative ideas.
It has been a tremendous honor for us to work alongside other Epilepsy Leadership Council members on behalf of the entire membership to bring the patient voice to these benchmarks. Now, it’s time for our community’s voice to be heard. If we want to move pediatric epilepsy surgery research forward to answer all the questions we have about our children, this is a powerful way to do it.
The Epilepsy Leadership Council Research Benchmarks Workgroup includes:
Chair Laura Lubbers, PhD, CURE Citizens United for Research in Epilepsy; Chair Ilene Miller, Rare Epilepsies Network
Members: Mary Anne Meskis, Dravet Syndrome Foundation; JayEtta Hecker, Wishes for Elliott; Heidi Grabenstatter, PhD, International Foundation for CDKL5 Research; Brandy Fureman, PhD, Epilepsy Foundation; Steve Roberds, PhD, Tuberous Sclerosis Alliance; Vanessa Vogel-Farley, Dup15q Alliance; Brandy Parker-McFadden, My Epilepsy Story; Amber Freed, SLC6A1Connect; Monika Jones, JD, The Brain Recovery Project: Childhood Epilepsy Surgery Foundation