3 3 My speech at the National ALS Conference on outreach is tomorrow ( Wednesday ) at 9:30 AM EST! Due to travel complications, I am not able to attend, so my mom will be giving the speech for me! You can watch the event live at this link: http://www.alsregistrymtg.com
Category: Events
The Power of the Bucket List
5 The approval of Radicava, the first medicine for ALS in 22 years, had me reconsidering my post that labels my belief that I will survive this disease "wild." Then, the vessel of my most precious dream was wrecked on jagged rocks I never saw coming. The federal budget for 2018 calls for the complete defunding … Continue reading The Power of the Bucket List
Drug Trial FOMO
I have a serious case of drug trial FOMO (fear of missing out). I just completed my year-long Tirasemtiv drug trial. I don’t know whether I was on the placebo or active drug. However, I have been invited to join the open-label extension of the clinical trial. That would mean I definitely would have an … Continue reading Drug Trial FOMO
The Luckiest (Wo)Man: Ales for ALS
Check out this Father's day brew kit. It's part of the Ales for ALS program. A few months ago I was trying to decide what I wanted to brew and when I saw a kit with the Ales for ALS logo, I knew I had to do it. Cheers, this one is for you Rachel! … Continue reading The Luckiest (Wo)Man: Ales for ALS
Don’t Talk-A-Thon: Part 3
"You do not need to leave your room. Remain sitting at your table and listen. Do not even listen, simply wait, be quiet still and solitary. The world will freely offer itself to you to be unmasked, it has no choice, it will roll in ecstasy at your feet" - Franz Kafka. Those of you … Continue reading Don’t Talk-A-Thon: Part 3
Don’t Talk-A-Thon: Part 2
Hello all! I'm already impressed, touched, and overwhelmed by your stories of how your hour of silence went today. I would LOVE to share your stories of silence; it would be amazingly powerful to have them all in one place. Please consider sharing your experience below. If you are not able to spend an hour … Continue reading Don’t Talk-A-Thon: Part 2
Don’t Talk-A-Thon: Part 1
Today is the Don't Talk-A-Thon, a fundraising event in which participants vow an hour of silence in support of those who are forever silenced by ALS. In honor of this special event, I am sharing a very personal and painful story about the first time that ALS stole my voice. Remember, for me and countless … Continue reading Don’t Talk-A-Thon: Part 1
How I Live Now: Life With ALS 