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

3.4.19 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

1.19.19 Join Us?

Your Name: Nova Your Email: NGetz@ciscrp.org Event Website (if applicable): https://www.ciscrp.org/about-us/ Event Date and Location: Dear Sunny Strong, CISCRP is currently planning a half-day patient advisory board meeting in the Boston area in early February (2/6/2019 – 2/7/2019) to help inform the design of an Amyotrophic Lateral Sclerosis (ALS) clinical trial, and is actively seeking … Continue reading 1.19.19 Join Us?

1.17.19 Post-Symposium Fun

After the Symposium we were determined to adventure out and see everything we could of this city we had been in for almost a week. Monday morning we got up at found our way to the Kelvingrove Art Gallery and Museum. All of the public sites in Glasgow were free to attend, so we loaded … Continue reading 1.17.19 Post-Symposium Fun