We live surrounded, orbited by those that come into our lives. Most on the periphery, some fly close, even less shift our trajectory. But a few collide with us, forever changing us. Their impact leaving a lasting and enduring impression. When they leave us it hurts, yet we carry on, we must.
Recently we, our ALS family, lost two such persons. Each having left an incredible void in their families lives. Both fierce advocates, more importantly fierce mother’s . Both willing to fight not just for themselves, but for everyone afflicted by ALS.
Sandy, you altered the ALS research landscape by demanding and implementing accountability. Allowing those living with and affected by ALS to contribute directly to the impenetrable research machine. Your voice and presence never diminished by your failing body; when you spoke we hung on to every labored word of yours.
Taya, we met over zoom, and your energy and smile won us over. As we came to know you it soon became glaringly obvious, you were a force of nature. A fierce ALS advocate in your own right in Canada, and an avid fan of the Toronto Blue Jays. We were always in awe of your efforts and your candid perspectives.
I know my life is better for having met both of you. So with broken hearts and broken bodies we keep fighting. Our hearts continue beating with a broken cadence, having lost two resounding notes in our ALS song.