Chanda is in DC for the national Epilepsy Foundation’s Teen Speak Up and Public Policy Institute. Four New England Teens and two young adult Ambassadors are learning about advocacy. Today, they will visit with their Senators and Representatives to let them know what living with epilepsy means and to ask for protection of their rights and access to treatment. These young people are amazing.

For those who have been following this column and our story, you know that Chanda has been fighting her way back to health after a serious setback in late March. Should she be in DC? Many of you also know that Chanda founded our Young Leaders Network to help youth build community and to learn leadership, advocacy, and communication skills. There is so much strength in our community, and when our young people connect, the joy and power it brings is inspiring. Chanda’s commitment to growing this group and to each of the involved youth is inspiring.

It’s my birthday and I took the day off with the plan of going for a very long run. I do my best thinking running in the woods with my dogs. No doubt today’s run will feature Hope that Chanda is well and inspiration from our young people whose resilience and strength are paving the way for our community’s future. Should Chanda be in DC? She IS in DC, and she may need to stop and rest, but I/we cannot keep her from her life’s work - or from her life. For me, caring for someone with epilepsy is holding on and letting go at the same time. Epilepsy is a journey, and this chapter may be the most challenging for Chanda and for our family. And today she is DC. My birthday wish is for Chanda and all our families affected by epilepsy to find the strength to continue to rise up.