November is National Family Caregivers Month. I read this post a while back and it stuck with me. I'm a big fan of Kristin Neva - you can find her books here. This is a sensitive and evolving topic, in our house and marriage. I hope y'all find something thought provoking in Kristin's post below. Happy … Continue reading 11.11.19 Caregiver
#TalkALSToMe
11.1.19 FORE!
It truly is a good thing that I married a golfer, even if I did have to have him imported. I love that it's something we both enjoy and that's never a shortage on charity tournaments. We learned that this tournament for We Will Cure ALS raised $70k for research. In the ten years since … Continue reading 11.1.19 FORE!
10.31.19 Temporary?
12 days later, I'm starting to think these temporary tattoos aren't so temporary - ooops! This is my souvenir from the FW ALS Walk on Saturday, Oct 19th. Cindy the great out did herself once again with team spirit and getting everyone decked out. Huge "Thank You" to Dan and Susan at PuckettPro for getting … Continue reading 10.31.19 Temporary?
10.30.19 Provision
Y'all, I'm going to be completely honest for a second. No sugar coating, no pretending, no nothing. Are you ready for this truth bomb? I have absolutely no idea what I'm doing. Like none. Zip. Zero. Nada. We're coming up on my 5 year anniversary of being diagnosed with a disease that was supposed to … Continue reading 10.30.19 Provision
Round 27 – Done!
10.17.19 FOMO
I'm supposed to be in DC today. I'm supposed to be storming Capitol Hill. I'm supposed to be worn smooth out after a full day of legislative meetings. I'm supposed to be fighting for the ALS Community alongside other pALS. I've always had extreme FOMO - fear of missing out - and today I'm drowning … Continue reading 10.17.19 FOMO
10.15.19 Cowtown Affair Success
We met as a committee last week to wrap up the 2nd Annual Cowtown Affair that was held on 9.18.19 and learned that over $58k was raised at this year's event. That's double from last year. The event sold out, the Chicken Shit Bingo was a hit, and lots of love was poured over families … Continue reading 10.15.19 Cowtown Affair Success
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?
Reblog: Envisioning a Bright Future for Our Survivors
Envisioning a Bright Future for Our Survivors BY RICK JOBUS IN COLUMNS, NOTES FROM THE ALS FRONT - A COLUMN BY RICK JOBUS. From time to time, a comment in response to one of my columns reveals that the commenter has lost someone to ALS. The first time it happened, I paid it little mind. Subsequent occurrences aroused … Continue reading Reblog: Envisioning a Bright Future for Our Survivors
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 