iConquer MS needs you!

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Are you Ready to Help Conquer Multiple Sclerosis?

 

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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.

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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.

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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 –

 

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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 –

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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,

Laura

 

 

 

 

A Familiar Tale

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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,

Laura