The first rule of blogging is to post good content on a regular basis. The second is to keep your posts short, to the point and to not mix multiple topics into one post. Oh boy, am I in trouble …
My 6th trip to DC this year ended reflecting at 35,000′ with a Crater Lake Hazelnut Espresso Vodka courtesy of gold status on Alaska Airlines as I flew non-stop back home to Portland Friday evening.
I
admit I was stoked because of so many good people, connections, meetings, and events that I had experienced over the past three days.
And then I connected to Alaska’s WiFi …
Before I tell you what I learned from the world below, let me share a few of the other highlights … each of which I will share much more about in coming posts.
13 Senate ofice meetings in one day
Jay Griessing of Biomarin set up and attended 14 Senate 
office meetings and one House meeting with me … 13 Senate meetings on Wednesday alone! I have been to Senate offices many times over perhaps a decade – my prior max was 6 or 7 meetings. And better yet, because Congress is in recess (out campaigning) the two of us were very efficient as we meet with the staffers who do the real work on the Hill.
21st Century Cures is alive
We discussed 21st Century Cures, its history and what we hope to accomplish over the next few weeks during the lame duck Congressional session. The short update … there is a lot of enthusiasm on both the Senate and House side to get #CURESnow passed. It might be slimmed down a bit but we’ll take it.
Rare Policy
A missing voice was identified at 21st Century Cures strategic planning meeting held two weeks ago duringmy 5th trip to DC at the NORD Rare Disease Summit.
We need the voice of the patients, families, caregivers, and general public to push CURES to the finish line. I am about 24 hours away from launching a platform that lets this audience contact Congress with 1-click in a much more impactful way … and gives those of us managing these programs a lot more ability to build on these grass-roots networks. I spent three late nights last week communicating with a development team in India … and watching the Cubs historic win streamed to a small corner of my screen.
BIO Patient & Health Advocacy Summit
I again attended this annual gathering of advocacy and industry. The #BIOsummit2016 sessions and particularly the networking was exceptionally rich this year. BIO does great job of balancing the content and attendance so we all come away enriched and informed. I spent time with dozens of people from multiple stakeholder communities … advocacy, industry, policy, organizational leadership, consultants, communications, etc.
Airbnb
Ok , I’m adventuresome, frugal with MLD Foundation funds, and we’d reached our quota of room nights with Hilton family hotels to keep our status with them … so I made my first Airbnb reservation and stayed at a place described as Chic designer-rustic, 14th & U Neighborhood, Metro (if you sty there tell them Dean recommend you). A 3rd floor room, a tiny European style bathroom with a sideways sink, WiFi and great hosts. I’m no longer an Airbnb virgin.
And then …
One email subject line whisked me from this whirlwind activity, progress, and networking and reminded me of the reality of why I’m doing this … “Eden gets her wings”. Beth is not a MLD carrier and Eden was healthy by all accounts when she was adopted from Ethiopia by her single mother, Beth. 7-year old Eden was finally free from MLD, but no longer with us. Late infantile MLD starts to show its devastation around 18-24 months, just after Eden was brought to the US to live what was supposed to be a happy healthy life.
#FMLD
… which properly stands for Fighting MLD … but that’s not quite how I feel right now. ;(
I love what I do … and yet I hate the reasons I ever had to start doing it. MLD and Rare Disease are my passion and focus … but there are times where overall health and sometimes even bigger things are the concerns.
more to come …