What’s in a name?
The question sometimes comes up on how you name a foundation started for a condition such as KCNQ2 Encephalopathy. Coming off our third annual Summit, I thought it was timely to reflect on our name and the meaning behind it. Read straight through, it states our mission.
It reflects the mutation and condition affecting many not one.
This is the one that people ask most about. Are we being either too optimistic or boastful that as an organization we will be the people to find a cure? While that is an eventual dream, as a pragmatic group the idea of the word cure represents things equally important. Unity. Hope. Strength. Love. The pursuit of a cure is what keeps us strong together, moving our feet forward every day and leading with our hearts.
And finally the Alliance part recognizing that the total of the whole involved is so much more than the parts. Families, researchers, clinicians, therapists, pharmaceutical and government all play such important roles in the rare disease community that cannot be overstated. If we have an alliance motivated by the pursuit of hope and love, nothing can stand in our way of progress.