Last Friday I got the opportunity to contribute my patient testimony durning the public comments session of the ICER Midwest CEPAC Public Meeting on AMX0035 and Oral Edaravone for Amyotrophic Lateral Sclerosis. This is always something I enjoy doing because I want the people making decisions about ALS to know who those decisions impact. From … Continue reading 8.26.22 ICER Testimony
radicava
8.22.22 August Clinic Update
Do you ever tell people something in your head but forget to hit send? I've always been at a hefty level of insanity, but I swear it’s been worse since I had covid in January. I have MANY blog posts to purge from my head and I plan to get those out to you over … Continue reading 8.22.22 August Clinic Update
1.29.21 Deported
We recently discussed my newest additions, depression and anxiety, and today I’d like to elaborate on the latter. In the last week or so I’ve had two separate experiences with this bulbous, suffocating monster that I’m hoping will bring some joy to your Friday. Our first adventure takes us to the scary city of Dallas … Continue reading 1.29.21 Deported
6.16.20 Awareness Challenge Continued
I wouldn't be the Sunny you know and love if I wasn't late. I'm not even really sorry about it, it's just how it goes. Without further ado, here is the second half of my Awareness Month posts. May 20: This wasn't my finest moment May 21: Phil, my skinny crusader May 22: My pint … Continue reading 6.16.20 Awareness Challenge Continued
5.19.20 Awareness Challenge
ALS Awareness Month has been amazing! 19 days of absolute awesomeness. We've had some pretty great events so far, and in case you've been living under a rock here's what's been going on with SunnyStrong: May 1: ☀️ I’m Sunny 5️⃣ I’ve been a PALS for 5 years 👢 I live in Hico, TX 💃🏻 … Continue reading 5.19.20 Awareness Challenge
2.7.20 Here’s to 33
“When you pray for others, God listens to you and blesses them, and sometimes, when you are safe and happy, remember that someone has prayed for you.” Tuesday was amazing. Best birthday ever. Friends, family, fried chicken - these are a few of my favorite things. Slept in, had lunch with Ashley and Caden while … Continue reading 2.7.20 Here’s to 33
1.20.20 Celebrating
"To whom much is given, much will be required." Luke 12:48 January 20, 2015 5 years ago today, I was 27 and had a follow up appointment with a new neurologist in Dallas. My plan was to go to the appointment, get referred to another specialist, grab lunch and head into work. I was 18 … Continue reading 1.20.20 Celebrating
Round 27 – Done!
10.14.19 Ready to Walk?
Team SunnyStrong is legit killing it. Saturday is going to be awesome, we're going to cause a ruckus and take a stand against ALS. If you ordered a shirt they will be at the walk - otherwise I'll mail out orders next week. Here are the details that you need to know for Saturday: … Continue reading 10.14.19 Ready to Walk?
10.11.19 #alssymp
29th Annual International Symposium on ALS/MND Patient Fellow Program Background: "The key to defeating MND lies in fostering strong collaboration between leading researchers around the world, and sharing new understanding of the disease as rapidly as possible. This was the MND Association’s rationale behind the creation of the International Symposium on ALS/MND." - MND Association … Continue reading 10.11.19 #alssymp
SunnyStrong 