Hi everyone!
I just want to wish a happy and relaxing Thanksgiving to you and your family. Unless you are in charge of the food or despise your in-laws. In that case, my condolences.
I’ve had some writer’s block recently, but figured I’d write a quick post and provide a few links and updates:
- My travels have officially wound down for the year. In 2019, I attended conferences in Orlando, Philadelphia, Chicago, Boston and two in Washington, DC. We drove to all of them! Which ties in well with why I was in DC. In October, I spent 2 weeks in DC attending both the MDA Public Policy and Advocacy Confernce and the NORD Rare Summit. The MDA conference was all about policy, and one of the issues we discussed at length was air travel accessibility (or lack thereof). I wrote about my experience at the MDA conference here.

- Recently, I was profiled on the American Neuromuscular Foundation’s website. Also got the chance to shamelessly plug the work of my friend Monkol Lek.
- Rather than write a new list of all that I’m thankful for, here is my list from last year. It is still relevant today, although this time I’d rank the socks and space heater higher. God. Then family and friends. Then warmth.
- Speaking of lists, I have updated my list of Role Models, which was about a year out of date. I know there are many more to add, but I am about ready to take a nap and my short-term memory is MIA.
- My friend and former boss Adrienne Harper founded an organization called Bundles of Joy (BOJ), in Westchester County, NY. They are doing great work! If you are looking for an organization to donate to this holiday season, BOJ provides essentials like diapers and clothing to vulnerable families in the area. So many families are in need of the basics, and just a little help can make such a difference in their lives.
- This article about friendship really resonated with me. Certainly got me thinking about my own friends and how I can be a better friend.
Happy Thanksgiving, from the lurker.
(Seriously though – where are you supposed to hang up a giant photo of yourself?)