A look back at 2017 before jumping into 2018


Hello 2018!

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.

Family Christmas 2017

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.

Professional Conferences

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.

iConquerMS Research

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.

iConquerMS 2017 Leadership Summit (photo courtesy of ACP)

Healthcare Advocacy

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.

What’s next?

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,


iConquer MS needs you!


Are you Ready to Help Conquer Multiple Sclerosis?





The Accelerated Cure Project (ACP), a non-profit organization based in Boston, was founded by a person living with MS, and its sole focus has been to facilitate research that will lead to a cure for Multiple Sclerosis.  ACP has undertaken a number of exciting projects to work toward this goal, but none of them match the size of this one….  you and I have a central place to share our healthcare data and research ideas , through iConquerMS™.

This project is funded by the Patient Centered Outcomes Research  Institute (PCORI), which gathers its money from the fee paid by all of us on our private health insurance premiums.  This amount is only $1 per year per insured person, but spread across the entire US population, that adds up to some very impressive numbers.   Even more impressive is this organization is charged with finding ways to shift to patient centered health care and research.

In keeping with the patient centered approach, the majority of people guiding the development of iConquerMS™ are like you and me – people living with multiple sclerosis. Many of the leaders within iConquerMS™ are names familiar to you from being a part of the online MultipleSclerosis community, including Lisa EmrichStephanie ButlerChristie German, Dave Bexfield and Marc Stecker.

iCMS 2


MS research facilities and MS clinics are also represented through the presence of doctors and lead research scientists on the various committees.   Think about this for a minute – I would wager that iConquerMS™ is the first time all of these key players and organizations have been gathered into one place, a place where you and I as people living with multiple sclerosis are leading the discussion and developing the research.  And we are governing the project.

iCMS 3

There is so much more I can tell you about iConquerMS™ , PCORI and my involvement with both, but I want to get on to something more important – let’s talk about you.  What can you do to get involved?  Quite simply, you begin when you Join iConquerMS™ . The details of this project, the sponsors, its use and the informed consent information is on the iCnquerMS™ website, but let me share a brief overview of what you can expect to find –


iCMS 4

You will be asked to complete a few questionnaires that will look familiar to you  – especially the MS Neuro Quality of Life (MSNQoL) survey which most of us do regularly for our doctors or if we participate in NARCOMS. This survey is a standard tool in all types of MS studies and is a critical piece of information even though it might appear to be pretty useless.  The information from my own MSNQoL by itself means little except for me and my doctor, but if you have this completed by 20,000 people with MS, it gives a panoramic view of our quality of life.  iConquerMS™ needs this type of big data to look for our cure.


Stop and think about BIG DATA and what it will look like when we have the electronic medical records of 20,000 people who live with MS and the information that researchers will be able to glean from this big picture.


The next piece of iConquerMS™ is what I get most excited about – we have an opportunity to suggest research topics.  How many times have you wondered about your MS and a particular question comes to mind and you think it would be nice if someone looked into finding an answer?  We want your research ideas – one of us might have just the right question that unlocks one of the many mysteries of multiple sclerosis.  This word cloud is made from the research ideas already submitted –

iCMS 5

We are asking a lot from everyone to make this giant step to participate by sharing your health data, and investing your time in helping to build our Big Data picture for research.  But doesn’t MS ask a lot from us EVERYDAY?

Please join me at iConquerMS.org   – share the excitement and power of patient centered research!

wishing you well,






Patient Powered Research Networks (PPRN) & You


Do you wonder how you might get involved with research in a simple way? You can always connect with one of the Patient Powered Research Networks (PPRN’s) that are actively looking for people to share their health data and research questions. PPRN’s are an offspring of the Patient Centered Outcome Research Institute (PCORI) and cover a wide range of chronic diseases and conditions.


I write often about the Multiple Sclerosis PPRN, iConquerMS™, and my role as the Lead Patient Representative and now also the Chair of the Governing Board.  I would love to have all of you join our PPRN and join the Big Data movement to find the answers about multiple slcerosis.

You can learn about PPRN’s, and PCORI through our portal at www.iconquerms.org.  But perhaps you have other conditions you live with and want to do more.


Following is the complete list of PPRNs and some of their identifying information.  I encourage you to read through the list, explore the associated links and see where you might help advance research.  At the very least, we all qualify for Health eHeart, an ambitious heart history registry that only takes a few minutes to complete and is for everyone, whether we  have heart disease or not.


We can only build this new way of doing research by getting the  help of many people,  and that includes you.

Be well,



PPRN’s of as May 1, 2015 and their information, from data I have compiled. Let me know if you spot omissions or errors so I can make the corrections.


ALD Connect

Network name:  ALD Connect

Website: http://www.aldconnect.org/

Project summary available at:  http://www.pcori.org/research-results/2013/ald-connect

Organization: ALD Connect, Inc.

Condition: Adrenoleukodystrophy

Population Characteristics: Pediatric and Middle Aged


ABOUT – American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT Network)

Network Name:   ABOUT  Network

Website: https:aboutnetwork.org


Project summary available at http://www.pcori.org/node/4408

Organization: University of South Florida


Condition: Hereditary Breast and Ovarian Cancer

Population Characteristics: Female



Arthritis Patient Partnership with Comparative Effectiveness Researchers (AR-PoWER)

Network name: AR-PoWER


Website:  in progress

Project summary at http://www.pcori.org/node/4401


Organization: Global Healthy Living Foundation

Project summary available at http://www.pcori.org/node/4401


Condition: Arthritis (rheumatoid arthritis, spondyloarthritis), musculoskeletal disorders (osteoporosis), and inflammatory conditions (psoriasis)

Population Characteristics: All


The CCFA Partners Patient-Powered Research Network

Network name:  CCFA PPRN


Project summary available at http://www.pcori.org/node/4397

Website:  https://ccfa.med.unc.edu/user/sign_up

Organization: Crohn’s and Colitis Foundation of America, Inc.

Condition: Inflammatory bowel disease (Crohn’s disease and ulcerative colitis)

Population Characteristics: All


CENA – Community Engaged Network for All

Network name: CENA

Website: http://www.jsrdf.org/JSLIFE


Project summary available at http://www.pcori.org/node/4400

Organization: Genetic Alliance, Inc.

Condition: Alström syndrome, Dyskeratosis congenital, Gaucher disease, Hepatitis, Inflammatory breast cancer, Joubert syndrome, Klinefelter syndrome and associated conditions, Metachromatic leukodystrophy, Pseudoxanthoma elasticum (PXE), Psoriasis


Population Characteristics: All


The COPD Patient-Powered Research Network

Network name: COPD PPRN


Project summary available at http://www.pcori.org/node/4396

Website: www.COPDPPRN.org


Organization: COPD Foundation, Inc.

Condition: Chronic Obstructive Pulmonary Disorder

Population Characteristics: Multiple co-morbidities



Duchenne Connect Patient-Report Registry Infrastructure Project

Network name: DuchenneConnect Patient Registry

Project summary available at http://www.pcori.org/node/4404


Organization: Parent Project Muscular Dystrophy

Condition: Duchenne and Becker muscular dystrophy

Population Characteristics: Pediatric


Health eHeart Alliance

Network name:  Health eHeart Registry

Organization: University of California San Francisco

Website: https://www.health-eheartstudy.org/

Project summary available at http://www.pcori.org/node/4407

Condition: Cardiovascular health

Population Characteristics: Multiple co-morbidities


ImproveCareNow: A Learning Health System for Children with Crohn’s Disease and Ulcerative Colitis

Network name: ImproveCareNow Registry

Website: https://improvecarenow.org/

Project summary available at

Organization: Cincinnati Children’s Hospital Medical Center


Mood Patient-Powered Research Network

Network name: MoodNetwork

Website: www.moodnetwork.org


Project summary available at http://www.pcori.org/node/4403

Organization: Massachusetts General Hospital (The General Hospital Corp.)

Condition: Major Depressive Disorder (MDD) and Bipolar Disorder (BP)

Population Characteristics: Multiple co-morbidities.

Seeking to enroll : individuals with mood disorders (unipolar depression and bipolar disorder)


Why should someone join this PPRN: To help prioritize the research questions for mood disorders, to share data to better understand mood disorders and create better interventions, and to join a community of people actively seeking answers to the diagnosis and treatment of mood disorders.

(thanks to Dan Goodman, Mood PPRN Patient Rep, for the additional information)

A Multiple Sclerosis Patient-Powered Research Network

Network name: iConquerMS™

Organization: Accelerated Cure Project for Multiple Sclerosis

Website: www.iConquerMS.org

Project summary available at  http://www.pcori.org/node/4391


Condition: Multiple Sclerosis, including RRMS, SPMS and  PPMS,  as well as CIS and RIS

Population Characteristics: 70% Female

Enrolling controls: Yes

Why should someone join this PPRN?  iConquerMS is a unique opportunity to  share data and research questions from  a patient centered approach to find the cause of multiple sclerosis, and identify ways to improve the quality of life of people living with MS.


NephCure Kidney Network for Patients with Nephrotic Syndrome

Network name: NephCure Patient Registry

Organization: Arbor Research Collaborative for Health

Website:  https://www.nephcurekidneynetwork.org/


Project summary available at http://www.pcori.org/node/4394

Condition: Primary Nephrotic Syndrome (Focal Segmental Glomerulosclerosis [FSGS], Minimal Change Disease [MCD], and Membranous Nephropathy [MN])

Population Characteristics: All


The Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium

Network name: PARTNERS


Project summary available at http://www.pcori.org/node/4398

Organization: Duke University

Condition: Juvenile Rheumatic Disease

Population Characteristics: Pediatric

Enrolling controls:



Phelan-McDermid Syndrome Data Network


Organization: Phelan-McDermid Syndrome Foundation       Phelan McDermid Syndrome Foundation

Website:  https://pmsiregistry.patientcrossroads.org/


Project summary available at http://www.pcori.org/node/4405

Condition: Phelan-McDermid Syndrome

Population Characteristics: Pediatric


PI Patient Research Connection: PI-CONNECT

Network name: Pi-Connect

Organization: Immune Deficiency Foundation



Project summary available at http://www.pcori.org/node/4402

Condition: Primary Immunodeficiency Diseases

Population Characteristics: All


Rare Epilepsy Network (REN)

Network name: Rare Epilepsy Network Registry

Organization: Epilepsy Foundation

Website: https://ren.rti.org/


Project summary available at http://www.pcori.org/node/4399

Condition: Aicardi Syndrome, Lennox-Gastaut Syndrome, Phelan-McDermid Syndrome, Hypothalamic Hamartoma, Dravet Syndrome, and Tuberous Sclerosis

Population Characteristics: Pediatric


Sleep Apnea Patient Centered Outcomes Network (SAPCON)

Network name: MyApnea

Organization:American Sleep Apnea Association

Website: https://myapnea.org/

Project summary available at http://www.pcori.org/node/4393

Condition: Sleep Apnea

Population Characteristics: Multiple co-morbidities



The Vasculitis Patient-Powered Research Network

Network name: Vasculitis Patient-Powered Research Network

The Trustees of the University of Pennsylvania

Website: http://www.vpprn.org/


Project summary available at http://www.pcori.org/node/4406

Condition: Vasculitis

Population Characteristics: Adults










Last month the PCORI group charged with looking into Multiple Sclerosis clinical effectiveness research questions  convened a meeting of  people who had various interests in the task.  I was asked to participate  because I am the lead patient representative for iConquerMS™  with the Accelerated Cure Project for the MS PCORnet.

I wrote about this meeting and asked for input from anyone who cared to share their preferences of choices  for possible research questions.  Thank you if you took the time – I did include your preferences in noting the selections i entered.

If you did not see it, you might want to back up and read my original post before you go any further with reading  this one so you understand the context of the rest of what I am going to write.

PCORI and Me and You!! – Help Prioritize Research Topics

Now the prioritized questions have been returned to us and I have those in two different forms; the first is the overall ranking of the questions and the second group is a look at how each interest group cast their preferences.  Keep in mind  there were four people with MS out of 40+ people who sat in on this discussion, and our voice did not carry the weight to match that of the other parties. The number of participants in each group were:

Clinician/Medical Professional (7)

Industry (12)

Other (5)

Patient Advocacy Organization (5)

Patient (4)

Payer (5)

Researcher (3)

PCORI will further refine these questions and then possible issue a call for proposals from researchers to do one or more of these.  The earliest that might happen would probably be August or September.

Here are the results in both forms –


# who ranked it at all
# who ranked it #1 or #2
J.  What are the comparative benefits and harms of non-pharmacological and pharmacological approaches in relation to key symptoms (e.g., emotional health, fatigue, cognition, pain) in people with MS?
F.  In people with progressive MS, what is the comparative effectiveness of different care delivery approaches (i.e., MS specialty center vs. community neurology; direct care vs. telemedicine; “specialized medical home” vs. community neurology delivery of care) in improving outcomes such as functional status, quality of life, symptoms, ER use, and hospitalization?
I.  Does an integrative model of care along with DMT in a newly diagnosed individuals affect disability progression and symptoms (physical, emotional and cognitive) compared to treatment with DMT alone?
A:  What are the comparative benefits and harms of different disease-modifying therapies in newly diagnosed relapsing, remitting multiple sclerosis on disease activity, disease progression, symptoms, and quality of life?
B.  Among MS patients receiving a DMT who experience disease activity, what are the benefits and harms of continuing the same therapy versus changing to a new medication?
C.  Is treatment escalation using DMTs as effective as starting treatment with higher efficacy treatments in early active, previously untreated patients?
E.  What is the comparative effectiveness of stopping versus continuing therapy after a period of prolonged disease stability in patient with MS?
L.  What are the benefits and harms of early vs. delayed treatment with DMTs, in terms of symptoms, function, QOL, and disease activity in treatment-naive patients recently-diagnosed patients (meeting McDonald criteria within 12 months)?
M.  In patients who recently transitioned from relapsing to progressive MS or were recently diagnosed with SPMS, what are the benefits and harms of continuing compared to discontinuing DMTs on outcomes including but not limited to symptoms, QOL, function, disease activity, disability, and/or mortality?
H.  In people with relapsing MS, what is the comparative effectiveness of physician-directed vs. allied health-directed vs. navigator-directed, vs. technological-enabled self-management tools for improving initial decision making, patient care experiences, decision regret, quality of life and adherence to therapy?
G.  In people with relapsing MS within 2 years of diagnosis, what is the comparative effectiveness of changing DMT using a NEDA strategy (no relapse, no new MRI or enhancing lesion, no change in disability) vs. not changing DMT in terms of functional status, quality of life, symptoms, ER use, and hospitalization?
K.  What are the comparative benefits and harms of specific dietary regimens in people with MS?
D.  What is the comparative effectiveness of smoking cessation efforts upon disease activity, progression, symptoms, and quality of life in MS?



This attachment is an Excel spreadsheet with all of the various stakeholder groups itemized.  I have to share this as an attachment because the file is so wide and spreads across a large number of columns and rows.

MS CER Ideas per interest group

Please be sure and tell me what you think after you have the chance to review these results. And a special thanks to everyone who  helped me in the first round to rate them on our behalf.

be well,