The Batten Disease community lost a great friend this week. My heart goes out to Lance Johnston, executive director of BDSRA and the one who has been there to help us try to make sense of everything since the very beginning. Lance lost his wife, Elaine, to cancer this week. I will never forget Elaine's kind eyes or the words she offered to me the first time I met her; Elaine accompanied Lance to Chapter One, our first fundraiser, in February of last year. Elaine and Lance lost their daughter to Batten, and the strength I saw in her that night helped give me a sense of purpose.

Lance, our thoughts and prayers are with you, now and always. Elaine, you will be missed.