ALS hurts - it hurts families, it hurts communities, and it hurts my heart. Our ALS community has lost some great ones recently that I'd like for you to meet. Michael Cimbura Click this link to meet Nicole and Mike. Mike was on stage with President Trump when the Right to Try Bill was signed … Continue reading 3.29.19 A Few Good Men
Awareness
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
3.16.19 Sunshine
I had my bloodwork done a few months ago and turns out my vitamin d was nearly nonexistent. Dr. Heitzman made me promise to get my butt outside and in the sunshine. Simultaneously the counselor I was seeing at the time suggested that I needed to increase my antidepressant because I wasn't feeling very "Sunny". … Continue reading 3.16.19 Sunshine
3.7.19 Scooter Gang
Washington DC is very accessible so we took advantage of the sunshine and the sights. This was Kacy's first trip to DC, and my first was fast and furious, so this was a chance for both of us to tour our Nation's Capital. They had these scooters for rent everywhere in downtown so of course … Continue reading 3.7.19 Scooter Gang
3.6.19 Capitol Hill
We had 6 meetings on Tuesday, SIX! It was an exhausting day, but so worthwhile. Kacy and I slept very well that evening, and Garth tried to die on us but TJ Maxx saved the day by letting us charge him up on the way home. We learned the importance of emphasizing the -sks in … Continue reading 3.6.19 Capitol Hill
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
Guest Post: Love Changes Everything
via Guest Post: Love Changes Everything
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
SunnyStrong 