Real ms iconquer ms professional#

I hope you will find your own voice and join me – we’re really in this together.Īre you Ready to Help Conquer Multiple Sclerosis? 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. What’s next?įor 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.

#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. 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 – for MS education and political change. I have made friends with so many wonderful, compassionate and dedicated advocates who work hard every day to improve the lives of everyone. 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.

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. IConquerMS 2017 Leadership Summit (photo courtesy of ACP) Healthcare Advocacy In September over 40 dedicated MS advocates gathered in MS to map out the future of iConquerMS. 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. I still pinch myself in disbelief that I get to work with the amazing people at Accelerated Cure Project for MS. We have approximately 4,400 people with a personal interest in MS enrolled and sharing their own health data. My own research interests continue with the growth of the iConquerMS patient network. 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. 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. (American Committee for Treatment Research in MS and Consortium for MS Centers). 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.

Real ms iconquer ms professional#

Professional ConferencesĢ017 was a stellar year for conference opportunities as both a participant and an observer. I’m no worse but certainly I’m not better. Do I notice a difference? Other than not spending as much time with my favorite MS infusion nurses, not yet. 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). PS- if the above link doesn’t work, here is the YouTube link-įamily Christmas 2017 My MS Care & Treatment I hope you will watch this short video to hear why I think our time to be at the table with researchers has finally arrived. My presentation From Patients to Partners: Patient Centered Research, is available to view on YouTube.

My part of the presentation focused on the value of including patients in research and how our role has evolved from research subject to research partners. Robert presented much of the nuts and bolts of what we do, how we do it and with whom. Robert McBurney, my Co-principal investigator and I represented iConquerMS. It was a significant recognition of our work in patient engagement for iConquerMS to be asked to present to this board of researchers, funders and NMSS staff when they met in Chicago in June. The National Multiple Sclerosis Society (NMSS) holds a semi-annual meeting to review research proposals for future funding and to discuss the future direction of the society’s program efforts.