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,


A Familiar Tale


It was the daily routine: wake, dress, pop a handful of pills, and then slowly make the way out the door.    Each morning begins with the same question, what is the day going to hold?   Not daring to look back or forward, she focuses to stay in the moment – life at age 55 could be so much better but she realizes it could also be worse.  She wanders home after being out for the day, feeling the stress through her legs, torso and up into the brain.   Life is sure a challenge living with MS.  She eases into the routine of taking more pills, selecting a spot on her weary body for the next injection, and pauses to think how much better life could be if it weren’t for this damn multiple sclerosis.  Physically spent, she drops heavily into her favorite chair and the fatigue washes over her.  Almost instantly, she falls into a heavy sleep.


When she awakens, it’s with the usual sluggishness that tells her the body is again under the spell of MS and awaiting the next pharmaceutical jolt to get moving for the day.  She reaches to the table beside her and is immediately gripped by panic  –  Where are the pills?  Her home has a lineup of bottles and elixirs and syringes, all in order and serving a purpose – although not perfect, these medicines slow the progression of her MS and keep her moving. Where are they now??


She tries to stand but can’t move – looking down, she is gripped with confusion because she is not in her favorite easy chair but seated in a wheelchair.  How could this have happened ?  She was taking her medicines and although life with MS was a struggle, she was still functioning.  Why was she no longer moving on her own?  She releases the brake and wheels herself across the room and catches sight of a reflection in the mirror – it is a younger vision of herself, possibly no older than 25.  She is confused and spins around to head the other direction and is faced with a calendar hanging on the wall open to 1985. How could that be?  Slowly it occurs to her that she’s no longer in the present, but has somehow slipped into an era where there were no treatments for MS and people were left to languish, destined to finish the final years of their  lives in wheelchairs or worse.


She closes her eyes and feels the anguish of helplessness well up inside – at least in her present day there were options with disease modifying therapies.  Here there is nothing but a feeling of hopelessness.  She closes her eyes, and drops her head back, thinking of how someday things  will be different.   Surely a cure can’t be that far away, can it?


She allows herself to be lured into that almost unthinkable  thought – a world without Multiple Sclerosis – and startles to find herself whole, as if stepping out of a cloud onto a movie set.  Everything’s perfect, including her body, except for the added years. She may have aged, but she immediately recognizes she hasn’t felt this strong and connected in decades.  How could this be? She grabs a nearby computing device and quickly searches and finds that MS has been cured.  Ways to remyelinate the body were discovered in labs, a vaccination was developed, the cause of MS was found and the risk eradicated, and no one will contract this disease again.   Overjoyed, but also perplexed, she wonders how could this have possibly happened?


Reading beyond the headlines, she finds the answer –  Just as brave people with MS had offered themselves for trials to study ways to treat MS, the next generation of forward thinking people gave even more – they gave their history, their samples and their ideas, and together formed the big data that allowed researchers to deconstruct MS once and for all.   She’s left smiling with gratitude to the people who made the evolution of MS care possible.


Yes, this is a Dicken’s of a tale, but not so unimaginable.  Multiple Sclerosis research of the present, past and future is shaped by people living with MS. When we commit our time and resources to help, we build on what others have contributed to help move closer to a world free of MS.   Join me in sharing your MS history and ideas at https://iconquerms.org , the gateway to our future and the time when a cure is found.  Don’t wait until tomorrow – do it today!


Wishing you well,







MS Bloggers, Walkers, Researchers & More


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.


A gathering of the blogger community to discuss needs and interests of MSers


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.

with Lisa Emrich at the ACP offices in Boston










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.

What I might have seen if only the weather had left those fragile blossoms to hang one more day…..








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.

Be well,