Engaging Thoughts – a Column by Laura Kolaczkowski

Editor’s note: Columnist Laura Kolaczkowski reports from ACTRIMS in Orlando, Fla. The second Annual Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) got under way in Orlando, Fla., today and runs through Saturday. I have the honor of being on site to hear  presentations…

The MS world lost a very important person on Feb. 8. Britain’s Sir Peter Mansfield, Nobel Laureate, passed away at the age of 83. For most of us, his name means little, but his work revolutionized the way multiple sclerosis is diagnosed, and the way progression of the disease…

There are many people with MS who miss out on easy access to care from multiple sclerosis specialists, and they often have few places to turn for trusted information, or to get their questions answered. There is a place where we can get both for free – the …

One of my sisters called to let me know that CNN was doing live coverage of the Women’s March that was taking place in all 50 U.S. states, as well as many other countries. While we talked, one of the speakers came on and observed that the issues facing…

After my recent insurance experience, which I share here, I never again will wonder why some people give up on claiming their medical benefits. I have received Botox treatment for spasticity of my quad and hamstring muscles. This is an FDA-approved use, but to get this treatment there has…

Would you open your bank account and write a blank check to just anyone requesting something of value from you? Of course not. So, why would we do that with our healthcare information? I was recently sent an informed consent form from the MS clinic where I am treated,…

Long-awaited approval of the multiple sclerosis drug Ocrevus (ocrelizumab) has been delayed by the U.S. Food and Drug Administration. What had been publicized widely as a late December 2016 FDA approval hearing has now been pushed to late March 2017. The drug’s manufacturer, Genentech, issued a very…

We all know the credit card commercial with actor Samuel L. Jackson talking about the buying power and the return on a certain credit card. He speaks about the bonus cash-back offers you can accrue if you just keep spending money and putting it on your credit card. The tag…

I make no secret that I believe MS nurse practitioners (NP) are the people who make the difference in an MS clinic. They are as knowledgeable as most neurologists when it comes to treating multiple sclerosis and usually can see their patients without the time constraints that doctors face.

Family Caregiver Month is observed each November, and it is estimated there are more than 90 million family members in the U.S. giving full-time care to people who have complex needs. In recognition of the work of the multiple sclerosis caregiver community, pharmaceutical company Genentech, a subsidiary of Roche,…

I recently had the opportunity to serve as a consumer reviewer of research applications submitted to the Multiple Sclerosis Research Program (MSRP) sponsored by the Department of Defense. I was nominated by the Accelerated Cure Project for MS for this role.  As a consumer reviewer, I was a full…

Should those of us with multiple sclerosis get vaccinated for influenza or not? It’s a debate that takes place in many MS communities each fall. The argument against the flu immunization is based on half-truths and flat-out misconceptions — and a lot of anecdotal tales that don’t hold up to…

ECTRIMS 2016 (European Committee for Treatment and Research in MS) produced lots of stories with exciting headlines about advances in MS research — and hopefully you read many of them here at MS News Today. As I went through the various presentation titles, there were a couple that jumped…

If only we were cherub faced children, then perhaps someone would have listened to us in the past few years as we voiced concern and then outrage over the escalating costs of our MS disease modifying therapy (DMT) drugs. I’ve listened to the outcry in recent weeks about the astronomical…

The importance of getting a representative group of people, also known as subjects, engaged in  clinical trials cannot be understated. There is so much that we need to know when it comes to multiple sclerosis, but the picture cannot be complete unless the cohort of subjects includes people from…

There was an almost audible gasp in the room as I was making a presentation recently at a multiple sclerosis talk.  What did I say that was so shocking?  I merely said – if you don’t agree with your prescribed course of treatment, it is perfectly OK to speak up…

Most of us with MS rely on pharmacological assistance to make it through the day.  I know taking pills by the handful is the regimen of many people, whether they are sick with multiple sclerosis or one of many other disorders.  I was surprised at my own emotional reaction…

Karen Staman and I met a while back through a National Institute of Health and Duke University research collaborative effort.  She is a scientific writer by trade, which means she sits through lots of conversation and puts everyone else’s thoughts into cohesive sentences that can then be published, and…

  You want to help find answers about multiple sclerosis but don’t know how, and I hear your frustration about being unable to contribute in meaningful ways. Let me share with you the news that REAL MS (Research Engagement About Life with MS) was launched this summer, and I…

This idea is so simple. But it has been overlooked for years until the partners of Gray Consulting, a Philadelphia firm, connected the dots and developed a better way to engage and retain people in clinical trials.  Scott Gray, CEO, took time out to speak with me about…

Do you take your drugs as they are prescribed?  It turns out a lot of us don’t and that is a concern to the people in charge of our healthcare dollars. The California Association of  Health Plans estimates that costs for prescription for chronic diseases such as multiple sclerosis, rheumatoid…

Can we all agree that research studies are important and they are necessary to prove whether a concept works or it doesn’t? Even from the biggest failures, we can learn more. We can also all agree that research has to be done via properly conducted studies to be accepted as…

We wait in anticipation for multiple sclerosis (MS) drugs to clear Phase 3 clinical trials and get to the Food and Drug Administration (FDA) for approval, but I honesty knew little of the process that takes place before the large-scale testing of drugs in Phase 3. I was selected to…

This chewing gum handout in the exhibit area of the recent Drug Information Association (DIA) 2016 meeting says it all from the pharmaceutical company perspective – recruiting patients for their studies is often a distasteful and difficult process. While I appreciated the gum in this package, this image left a…

When I see a new drug for MS come to market, I only think of the company behind that product – it could be one of the big names such as Genentech, Genzyme, EMD Serono, Biogen, or one of the many other players in the field.  I never stopped to…

A few months ago I had the honor of meeting David Lacks, a grandson of Henrietta Lacks. It was at a large meeting and not everyone in the room understood his link to our medical care; the people who already knew about grandmother had most probably read the book…

Editor’s Note: Multiple Sclerosis News Today welcomes Laura Kolaczkowski to our team of Patient Specialists and MS bloggers. As you will read in her introductory post below, Laura brings to her new column a wealth of Multiple Sclerosis related insights, both as a patient and activist/advocate for raising awareness and research…