3.29.19 A Few Good Men

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

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

2.22.19 Dr. Sunny Einstein

For those of you who are new to this party, it's important that you know: I, Sunny Brous Erasmus like to go. Go everywhere, talk to everyone, eat everything. cute birthday bag from my tribe that describes me perfectly It takes a lot more prep work and planning nowadays to get me out the door … Continue reading 2.22.19 Dr. Sunny Einstein