If you're just tuning in, here's the Reader's Digest Condensed version... I have MS, I decided to enter a clinical trial for Gilenya (then FTY720 / Fingolimod), blogged it from start to finish, caught the eye of Craig Lipset from Pfizer who reached out to have a conversation about clinical trials and social media, and subsequently got invited to speak at the 2nd Annual Disruptive Innovations conference held at the Fairmont Copley Plaza Hotel in Boston, MA.
I literally went from lying on my back in bed five years ago, contemplating suicide because my quality of life was so poor to addressing researchers and representing the empowered epatient on stage with heavy hitters beside me from the big pharmaceutical companies.
I have a purpose in life, finally, it seems. Some people live and die never feeling this passionate about anything; never feeling a "calling". I had to live 50 years before realizing I'd met my destiny. If it took getting sick and eventually taking my health decisions into my own hands to bring about this change in my life's direction, then I'm okay with that. I finally feel like I have something to share with the world. I feel like an individual CAN have a voice and if I choose my words carefully, maybe I can leave a lasting impression.
Sounds grandiose? Well, I'm figuring out that you have to have dreams in the first place if they are ever going to come true. So why not dream big? I want to impact the world and leave an impression the size of the grand canyon. So some day there will be a velvet rope around the dent I make with a bronze plaque stating "Jeri Burtchell, pioneer and epatient, impacted the world of clinical research and gave lab rats everywhere a voice."
But I need to get back to recapping the conference...
I stayed at the Fairmont Copley Plaza Hotel (where the conference was held) and I swear to God I walked into that place feeling just like Cinderella going to the ball. Everything was ornately carved, gilded in gold, dripping of money. Chandeliers lit the lobby and a 100 year old mosaic tile floor strewn roses beneath my feet. I struggled to make sure I kept both glass slippers on my feet. I pinched myself regularly.
Wednesday, September 12, the Speakers' Dinner took place at Davio's restaurant about five blocks from the Hotel. Until now, I had been on my own, not yet meeting any of the players in this fairy tale. I arrived at Davio's and found Ciara from theconferenceforum.org and latched onto her as if she were a flotation device. I got a glass of white wine and proceeded to attempt to "mingle" among the sea of expensive looking suits. At first I was terrified. I was so out of my element. These are all important people. I'm just a stay-at-home mom who has a chronic illness and happened to blog about it. How could I possibly hold my own here?
But gradually, I began to relax. I would say the wine had something to do with it, but that's not giving these people the credit they deserve – nor myself! It turns out that, suits aside, they were all interesting, warm, friendly, funny people who were there because they all want to effect change and make an impact. I was welcomed with open arms, tons of respect, and more than a little curiosity. I felt like a princess and I kept checking that I still had both glass slippers. (To everyone else they looked like black leather tennis shoes since the combination of MS and walking five blocks to dinner negates the wearing of high heels).
Seating was pre-arranged so it was no accident that I had Craig Lipset on my right and Bonnie from www.bbkworldwide.com on my left. Across from me were three more people who I can picture clearly and recall lots of the conversation about who they are and what they do, but the only business card I got was from Jules Mitchel, President of Target Health, Inc. He mentioned the possibility of involvement on a patient advisory panel.
The dinner was fantastic, the conversation topped it, and the grand finale of the evening was when Craig introduced me to John Orloff, Senior Vice President, Global Development & Chief Medical Officer of Novartis Pharma AG, and Donald Stanski, MD, Global Head of Modeling & Simulation at Novartis. As soon as I saw John Orloff, I recognized him from the conference brochure as he was one of the three men who led the Disruptive Innovations conference along with Craig Lipset from Pfizer, and Andreas Koester of Johnson & Johnson. I jumped up, feeling so overwhelmed to meet someone in so high a position at the drug company that gave me my life back, that I not only shook his hand, but insisted on hugging him. I think he was a little surprised by this greeting, but he took it in stride and allowed me to gush as if I'd just met George Clooney or something.
Donald Stanski claimed that he just carries John Orloff's bags around, but I have a feeling his job is much more important that that, judging by the business card he gave me.
I was privileged to have them both accompany me back to the hotel from Davio's and along the way we shared stories. I told them why I was attending and how I had blogged my clinical trial that they had sponsored and they were excited to meet a trial patient and hear how their work had so positively impacted my life.
Ever since my trial ended and so much time has now past since my last MS relapse (April 7, 2007 – 5 years, 5 months and 11 days, but who's counting?) I have wanted to express my overwhelming gratitude to anyone even remotely connected to Novartis and the clinical trials. I am their biggest cheerleader.
They both seemed very inspired by my story and motivated to help me spread my positive message to as many people at Novartis as possible. Who knows? There may be more travel plans in my future.
That night, I laid awake for hours, not wanting to miss a single moment of this amazing experience – afraid I'd wake up the next day having dreamed it all – not having any idea that it would just keep getting better and better.
Next Up: Day 1 of the conference.
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