In March of 2021, the Child Neurology Foundation brought together 16 advocacy and industry leaders to discuss the reality of these complex relationships, and how to make them more productive. We called this ongoing conversation, Better Together for Kids. Throughout the year, this group met virtually in a learning-collaborative framework to focus where there is an apparent mismatch between the goals, needs, and priorities of advocacy groups and their industry counterparts. We had the hypothesis that both groups share a true desire to have a more productive relationship, but exist within frameworks that make it difficult to understand each other’s roles, needs and priorities.
And the hypothesis turned out to be true!
“As discussions progressed, it turned out that we had not always been speaking each other’s languages. What we clearly shared, though, was a frustration with the status quo, a desire to have more meaningful interactions, and a goal to better support each other in the process of bringing potential treatments forward.” – Hillary Savoie, PhD, Founder of The Cute Syndrome Foundation
“We are enormously grateful to the Child Neurology Foundation for convening this important Working Group to engage in these timely and critical conversations. It has opened the door of transparency and allowed advocacy organizations and industry to find common language enabling better communications and more robust working relationships.” – Kari Rosbeck, President and CEO of TSC Alliance
“While at first, I was slightly hesitant to invest the time into a deep dive of the mismatch between advocacy and industry groups due to past futile attempts, these meetings moderated through CNF proved to be extremely valuable. Through the multiple meetings, it became abundantly clear that the shared passion advocacy and industry groups hold to find treatments for patients suffering from neurological disorders far outshone the differences.” – Leah Myers, Founder and Executive Director of FamilieSCN2A Foundation
Participants consistently engaged in 6 facilitated discussions which yielded deeper insights and opportunities for applied change between these stakeholder groups. We hope to begin to share these shared learnings in early 2022, including practical relationship-building tactics both industry and advocacy partners can utilize, insights into industry compliance rules and regulations, and clarification over language that carries different meanings whether you are an industry partner versus a patient advocate. As well as many others!
In fact, there was such energy to continue this conversation, CNF will continue it into 2022 with expanded participation! Stay tuned here for more information!
For now, CNF would like to thank the following groups for joining in the inaugural convening of Better Together for Kids:
- Batten’s Disease Research & Support Association
- Dravet Syndrome Foundation
- FamilieSCN2A Foundation
- Global Genes
- Greenwich Biosciences
- Hope for HIE
- PTC Therapeutics
- The Cute Syndrome Foundation
- TSC Alliance
- Upsher Smith Laboratories
- VNS Therapy by Liva Nova