4.24.19 Collaborations for ALS Awareness Month

2019 officially marks the 27th year that the United States recognizes the month of May as ALS Awareness Month. The purpose of an awareness campaign generally includes increase concern by informing the targeted audience, creating a positive image, and attempts to change the past behavior. The first year, 2015, I hadn't publicly announced my diagnosis … Continue reading 4.24.19 Collaborations for ALS Awareness Month

4.15.19 Shirts For All

May means ALS Awareness Month. ALS Awareness Month means you need SunnyStrong Swag. Willie agrees. Shirts are available now in the SunnyStrong store. Long sleeve, Short sleeve, Bro Tank styles in Purple, Yellow, and Grey. Cutting this order off on Tuesday, April 30th so order today! We'll order again in October for the Walk. You … Continue reading 4.15.19 Shirts For All

3.28.19 Hi, I’m Crazy

Don't worry, I'm still here. I'm still running 100 mph in different directions. I'm still crazy. My hope is that y'all have kept an eye on our insanity via social media that's linked to our blog's homepage. It's all there, I've just found it hard to sit down and write actual sentences but I would … Continue reading 3.28.19 Hi, I’m Crazy

3.5.19 #RareDC2019

The week was jam packed with all kinds of events, all in different places on Capitol Hill and all involving different rare disease communities. We learned a lot about different efforts being made to shed more light on the rare diseases of the world, and met many fighters trying to engage with others that share … Continue reading 3.5.19 #RareDC2019

3.4.19 What a Week

Washington DC is a truly magical place. It's where history meets future, and possibilities are endless. It was a wonderful week spent with my girl, and how wonderful it was to have her all to myself all week.   Kacy and I have traveled together many times, and thankfully for me she keeps agreeing to … Continue reading 3.4.19 What a Week

2.25.19 Join Us in DC on the Livestream

Email from the Every Life Foundation: We are excited many of you will be joining us in DC for Rare Disease Week on Capitol Hill. For those who are not able to travel to Washington, DC, there are a number of ways to participate from your own home! Please feel free to share with your … Continue reading 2.25.19 Join Us in DC on the Livestream