Thank you, Sue Dremann, for writing this beautiful story. And extra thanks to Jon F. and Karen K. for letting her tell their story. I suggest the paper re-run it on Valentine's Day as it is a true love story.

Profile of a truly loving couple manifesting great spirit and spunk. Thanks for the inspiring article and video.

Thank you Karen, Jon and Sue for sharing this beautiful story of love and resilience.

My husband also has ALS, and since he does not want a service after he dies, we decided to have an Aloha (hello, goodbye, we love you ) Party for him. Over 125 of his friends came and celebrated his life while he was still able to talk. He sat the entire time as breathing is difficult, but everyone came over to him. We also have invited couples over for a glass of wine in the evening or encouraged visitors during the day as it gives us a chance to get to know them better and to make them comfortable about discussing ALS. Family has been wonderful and some have come from across the country to show how much they love him.He was diagnosed 6 months ago, but because of his age (82) the disease is progressing rapidly and we are trying to do whatever he can still do while he can.

They also had demanding careers: she as a branding strategist for high-powered Silicon Valley people; he as a software architect, engineering manager and product manager on Adobe products such as Illustrator, Acrobat and Premiere. He became known for developing the Precision Graphics Markup Language, the original Scalable Vector Graphics language specification (a standard for the non-blurry text and graphics), and as a major contributor to the EPUB standard for digital books.