1.19.19 Join Us?

Your Name: Nova Your Email: NGetz@ciscrp.org Event Website (if applicable): https://www.ciscrp.org/about-us/ Event Date and Location: Dear Sunny Strong, CISCRP is currently planning a half-day patient advisory board meeting in the Boston area in early February (2/6/2019 – 2/7/2019) to help inform the design of an Amyotrophic Lateral Sclerosis (ALS) clinical trial, and is actively seeking … Continue reading 1.19.19 Join Us?

1.18.19 Four Years of ALS

Sunday marks four years since I was diagnosed with Amyotrophic Lateral Sclerosis. This picture was taken the next day when I returned to work, and life. We've done a lot in 4 years, met lots of people, built a powerful force called SunnyStrong, and celebrated many victories while mourning many losses. ALS sucks, and we … Continue reading 1.18.19 Four Years of ALS

1.14.19 But This Mouth…

  Thursday I had the privileged to speak at the Continuity of Care monthly meeting with my sweet, supermom friend Toni Sudderth. From their website: "Continuity of Care, Fort Worth is a network of healthcare professionals and related industries dedicated to promoting interdisciplinary communication and resources. Continuity of Care (C of C) Fort Worth began … Continue reading 1.14.19 But This Mouth…

Remembering Our Beloved Friend and Leader, Stephen Winthrop, Chair, The ALS Association Board of Trustees

Carlie and I got to spend time with Stephen and Jane at the ALS Advocacy Conference in Washington, DC. ALS does not make sense, but Stephen invested everything he had into fighting this disease. I admire his devotion to improving my life, and the lives of other families with ALS.   via Remembering Our Beloved … Continue reading Remembering Our Beloved Friend and Leader, Stephen Winthrop, Chair, The ALS Association Board of Trustees