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

2.19.19 Rare Disease Week

  Kacy and I are headed to DC in the name of ALS Awareness. We are both so, so, SO excited for all of the different events going on during Rare Disease Week. Personally I'm excited to fight for ALS from a slightly different front. Because this week isn't devoted to any one specific disease, … Continue reading 2.19.19 Rare Disease Week

2.18.19 SunnyStrong Heads Back to DC

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide  FEBRUARY 12, 2019 BY MARY CHAPMAN IN NEWS. Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run as high as 350 million — they … Continue reading 2.18.19 SunnyStrong Heads Back to DC

2.15.19 Aunt Joanie

I am related to just about everyone, and I love every single second of it. My great aunt Joanie passed away on Wednesday, February 6th. She was my Grandma Nancy's only sister and they look so, so much alike. These pics are from a few years ago at Aunt Joanie's birthday party, 84th I believe. … Continue reading 2.15.19 Aunt Joanie