So much multiple sclerosis research, learning and advocacy took place for me in 2017 and very little of it was captured here in my personal blog, so I thought it would be a good time to do a brief recap. Not much changed in our personal lives- my husband is still working; our children are still productive adults; the grandchildren continue to grow into amazing and compassionate people; a new grand-dog was added to the pack; and I still have MS.
My MS Care & Treatment
On the MS front, I changed therapies and jumped from the monthly infusions of natalizumab (Tysabri) to the every six months regimen of ocrelizumab (Ocrevus). Do I notice a difference? Other than not spending as much time with my favorite MS infusion nurses, not yet. I’m no worse but certainly I’m not better. The verdict is still out on this change.
2017 was a stellar year for conference opportunities as both a participant and an observer. I was able to hear from some of the leading minds in MS research as an audience member and as a member of the press at ACTRIMS, and CMSC. (American Committee for Treatment Research in MS and Consortium for MS Centers). Sitting on patient advisory panels sponsored by MS pharmaceutical companies also happened this year and I learned more about the work of EMD Serono and iQuity. I also attended the annual Health Literacy Conference in Baltimore, which focused on how we communicate health information, and I did a plenary presentation at the UT San Antonio Health Disparities Conference and chaired a panel for the Drug Information Association annual meeting in Chicago.
My own research interests continue with the growth of the iConquerMS patient network. We have approximately 4,400 people with a personal interest in MS enrolled and sharing their own health data. I still pinch myself in disbelief that I get to work with the amazing people at Accelerated Cure Project for MS. We have made application to develop a learning health system focused on MS, and look forward to further developing this concept with experts from across the country. In September over 40 dedicated MS advocates gathered in MS to map out the future of iConquerMS.
There were also great opportunities to rejuvenate and refuel my passion for advocacy by meeting with other amazing health care advocates at PCORI’s annual meeting (where I shook Alan Alda’s hand, and was moved and inspired by Freddie White-Johnson and her work with the Fannie Lou Hamer Cancer Foundation), HealthEVoices 2017 sponsored by J&J/Janssen, and Connexions2017 hosted by HealthUnion. These 100’s of people aren’t just focused on MS, but a wide variety of health and social justice conditions, and face many of the same challenges such as access to care, affordable medicines and searching for cures. I have made friends with so many wonderful, compassionate and dedicated advocates who work hard every day to improve the lives of everyone.
I attended the Ohio NMSS Chapter annual MS Advocacy day in Columbus visiting state lawmakers, and I also continue to advocate using Twitter (please follow me – @lkay54) for MS education and political change. #TheResistance needs us all to make sure the most medically and economically needy are not ignored, and speaking up regularly is one way I can contribute.
For only a brief moment can I stop and reflect on having done so much in 2017, because there can be no rest until we find a cure for MS. Though I must admit each event I attend requires many days of recuperation time.There’s already a lot on my calendar, and 2018 should bring even more opportunities to be a voice for the MS community. I hope you will find your own voice and join me – we’re really in this together.
Wishing you well,