It’s been quite the week – it began on Saturday with our local NMSS MS Walk – we were finally given a beautiful weather day, which made for high spirits and the perfect combination for many people to gather for this good cause. Our team Ray of Hope: UD Alumni and Friends, had a strong showing of over 50 people.
On Sunday I headed off to Boston for a Monday meeting hosted by a pharmaceutical company- this was their first MS Blogger Summit, and while I am still not quite sure how I ended up on their radar and got an invitation, I was happy to be there. This was an impressive group of people who come at their MS and treatment from a wide variety of perspectives and it was a good reminder that my way of dealing with MS is not necessarily the way of others. There remains to be no right or wrong way to approach Multiple Sclerosis. I’ll be blogging more about this MS Blogger Summit, but for now I would like to share the image from this meeting so you can see this lovely group of people who make MS advocacy part of their regular routine.
Tuesday I had the honor of working in an intensive session with the team at The Accelerated Cure Project, alongside fellow blogger Lisa Emrich and my new MS friend Lindsay. We are working on a new patient portal that will allow people with MS to share electronic health data, which may not sound so novel since so many sites out there want our data. What makes ACP’s Patient Powered Research Network (MS PPRN) unique is patients like you and Lisa and me will help to identify research questions that we want answered.
We left the ACP meeting on the low fly to the airport to jet down to Washington DC for the next day’s PCORI sessions with all the PPRNs that have been funded. You will be hearing much more from me in the coming months about ways to participate in this project, but in the meantime you can learn more about PCORnet and its purpose through these links.
I am always excited and rejuvenated in my determination in advocating for the MS community when I have the opportunity to interact in person with others on a like path – to have four distinctly different encounters this week leaves me almost breathless and it definitely has left me exhausted and in need of more sleep. The only disappointment of the week was my goal to see the Cherry Blossoms in Washington DC were dashed by a strong spring wind and torrential rain that flushed the blooms from the trees a mere 18 hours before my arrival; a live view will remain on my bucket list and perhaps next year my timing will be better. Until then , the wonderful photos of others will have to do.
My latest blog for MultipleSclerosis.net What’s in a Name takes a look at what we are called as a community, and please be sure to take a moment for the Dr. Pepper link to understand my jingle – wouldn’t you like to be an MSer, too!
Enjoy the beginning of the spring season, and I’ll see you soon with more details.