Over time an ALS diagnosis can mean the loss of your ability to work, your ability to walk, and, sadly, your ability to speak. This can leave many people with ALS unable to tell their loved ones, in their own voice, just how loved they are. Families living with ALS say this is one of the … Continue reading Voice Your Love, in Honor of People With ALS – ALS Texas
Life as we know it
Advocacy
Learn how you can help The ALS Association advance scientific research to find a cure for ALS, provide resources for people with ALS and their loved ones, heighten awareness of the nature of the disease, and encourage government leaders to expand their support of research and patient care. Source: Advocacy
1.24.19 Good Luck!
We're just going to do the one board this year. Good Luck everybody! Game Rules: Sales will continue until all squares are sold or kickoff on Sunday, February 3th - whichever comes first. All sales will take place online through the SunnyStrong Store and winnings will be paid via paypal on Monday, February 4th. If … Continue reading 1.24.19 Good Luck!
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
Wednesday Pick Me Up
https://www.facebook.com/plugins/post.php?href=https%3A%2F%2Fwww.facebook.com%2Fteamgleason.org%2Fposts%2F2099903416752063&width=500 Wow. I'm thankful to be on his team. And he said f*ck'n 😉 I'm not the only one with an uncontrollable mouth - Click here if the above video doesn't load.
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…
Guest Post: ‘Remember Me as Being a Help to Others’
via Guest Post: ‘Remember Me as Being a Help to Others’
Closing out 2018
via Closing out 2018
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
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