November 11, 2019

By: Steph Atkins

One of my goals of living with ALS is to maintain my friendships near and far.  I have been friends with Ellen since we worked together in San Francisco nearly 20 years ago.  While I moved to the Seattle area, she moved back to Boston and we haven’t been able to catch up in person until Team Gleason Adventures, with the help of Augies’ Quest, sent me to Boston to visit old friends and new.  I am slightly mobility challenged by ALS and find it exhausting to walk around but I won’t let that stop me from doing my best to get out and about. It was great to catch up with Ellen like no time had passed and my local bestie Kandi was able to fly out and join me for my sightseeing and food focused day trips. 


My Adventure dates were ideal for me to attend ALS Therapy Development Institute’s Leadership Summit and White Coat Affair while in Boston.  I toured their lab on Thursday evening before the full day 15th Leadership Summit, where details of ALS TDI’s research and collaboration with Google were discussed.  These two events allowed me to connect with the researchers that are looking at the C9orf72 gene mutation that runs in my family.  Specifically we were able to discuss my very slow progression (diagnosed in 2011 with symptoms primarily limited to my right leg) and how they would like to look into my genes further to see if there is something they can find to help more patients slow their progression. These were very exciting talks where we decided to take blood and a skin sample before I left Boston to help in this research endeavor.  At the White Coat Affair, I was able to talk to many other patients and their families and friends before dancing the night away. I love my ALS community and how we can all support one another.


So not only was I able to make more connections in my ALS community, I had a great time visiting Cambridge and Boston for a week of sightseeing, great food and fun with my friends.  I am not good at asking for help to make things happen in my life, but Team Gleason and Augie’s Quest made this Adventure a possibility for me and I am so very thankful.