iConquerMS

iConquerMS, a research initiative where people affected by multiple sclerosis (MS) contribute their health data and ideas, is expanding its research program to include caregivers of people with MS. Established in 2014 by the Accelerated Cure Project (ACP), iConquerMS has launched a new website and research…

A little over a year ago, I wrote about whether people with multiple sclerosis (MS) should get a COVID-19 vaccine. I was anxious to be vaccinated as soon as I could, but I was also concerned about how the vaccines would affect someone with MS. Would the side effects…

Side effects upon receiving the COVID-19 vaccine in people with multiple sclerosis (MS) are similar to those reported in the general population, and patients on certain disease-modifying therapies are less likely to have vaccine reactions, a survey-based study found. The findings provide “a reassuring picture” for those who feel hesitant about…

The National Multiple Sclerosis Society announced investments of more than $16 million to support 50 new multi-year research projects and training fellowships addressing multiple sclerosis (MS). This latest series of investments, made over the spring, raised to $65 million total global research funding by the society. Although the…

Through two new initiatives, multiple sclerosis (MS) patients and their healthcare providers can contribute to a global effort to study and mitigate the impact of COVID-19 in MS and related disorders. The initiatives are aimed at helping clinicians identify the best way to manage the novel coronavirus in…

Leadership changes at the Accelerated Cure Project (ACP) for Multiple Sclerosis aim to enhance the nonprofit patient-founded organization’s research focus. Robert McBurney has stepped down as president and CEO after eight years to become ACP’s first chief research officer. He will continue in the position of research lead for the…

When I read online posts from people who treat their multiple sclerosis (MS) with vitamins and supplements, I wonder how many of us do that. And if these supplements really help. The people at the Accelerated Cure Project, which surveys those living with MS about things such as this,…

Exercise and multiple sclerosis are a natural pair and shown by research to be an important part of our MS care plan. We all can benefit from getting an assessment by a professional therapist and having an exercise plan customized for our MS, but accessing exercise in a…

I am excited and thankful to share with you a new collaboration between iConquerMS and the National Multiple Sclerosis Society (NMSS). For several years, I have worked with the people at the Accelerated Cure Project (ACP), a nonprofit organization that is the overseeing body for iConquerMS, to…

Hoping to expedite multiple sclerosis (MS) research and boost patient participation, the Accelerated Cure Project (ACP) for Multiple Sclerosis is teaming with the National Multiple Sclerosis Society. As part of the collaboration, the MS Society will make use of ACP’s iConquerMS, a research initiative to increase the engagement…

To increase the exchange of research information and goings-on with the patient community, the Accelerated Cure Project (ACP) for Multiple Sclerosis (MS) has teamed with RealTalk MS, a weekly podcast for those affected by the disease. Specifically, ACP will share ongoing results of its research initiative, iConquerMS. In…

People with multiple sclerosis (MS) rarely get the opportunity to talk to the people who design their medications. But a new collaboration is providing that opportunity to a few of us. The Accelerated Cure Project for Multiple Sclerosis (ACP) and pharmaceutical manufacturer EMD Serono have begun working together…

Two groups working to collect and promote patient-reported outcomes (PROs) in research and treatment for multiple sclerosis (MS) announced they will jointly explore ways to “standardize and harmonize” these measures so as to make them more effective. The effort brings the iConquerMS People-Powered Research Network, managed by the nonprofit Accelerated Cure Project…

I’m a great starter. How about you? I start projects but often lack the time or motivation to finish them. Hence, I have bins full of yarn waiting to be turned into scarves and lots of seeds that were meant to be planted in the past growing seasons. It’s…

Engaging all types of people for research isn’t just a nice thought. It is critical to obtaining research results that will be meaningful. Middle-aged white women are often the people who volunteer for studies. Men, young people, and most significantly, people of color, lack representation in studies. According…

Quality of life. These three words conjure different images for people, depending on their needs. Quality of life could mean having improved health, good relationships with others, and stress-free life. In the world of medical research, quality of life (QoL), is an endpoint result that is often understudied…

It’s that time of year when everyone is asking: What would you like for Christmas? Shopping for the perfect gift for me is a challenge because I’ve been around long enough to have most of the things I want or need. In fact, we have so much that at…

Since the approval of the first disease-modifying drug (DMD) for MS back in the mid-1990s, another dozen or so have been added as treatment options. But, just as MS affects each patient differently, so do the drugs. Missing has been a tool to follow MS patients and their…

When talking about MS research, we tend to focus on drug development because improved therapies, and even the cure for MS, will come from pharmaceuticals. But what do we know about other MS research that doesn’t involve taking a pill or enduring an injection? I’m talking about those…

I recently spent time at the annual meeting of the Drug Information Association (DIA), listening to presentations and talking with industry representatives about the multiple sclerosis community’s needs. DIA is a nonprofit association that has been around more than 50 years. Their primary interest is the development of healthcare…

If you’ve followed my writing, you already know I am committed to advancing patient-centered research and care. I am the lead patient representative and co-principal investigator for iConquerMS. One of the main goals of iConquerMS is to elevate the voice of people with MS into research. How do…

The practice of collecting data about how we MS patients go about living our lives, and then using that data to improve our patient care, seems to be gathering steam. In the European Union a project called Real World Evidence Data, or RWE, is working outside of the…

Have you ever wondered how your MS experience compares with others? Your ability to go out and do things? The therapies you’ve used? Your symptoms? Your age and ethnic background? Researchers from the Accelerated Cure Project for Multiple Sclerosis have been collecting this kind information for nearly two years…

Accelerated Cure Project is still recruiting for its iConquerMS project, REAL MS, an already 3,000-strong patient-powered research network for people with multiple sclerosis (MS). REAL MS (Research Engagement About Life with Multiple Sclerosis) is a longitudinal research study, designed partly by MS patients themselves, intending to answer critical questions about individual experiences of living with MS from among a large and heterogeneous group…

An innovation in multiple sclerosis (MS) research has been launched by the iConquerMS initiative — a longitudinal, prospective study called “REAL MS,” an acronym for “Research Engagement About Life with Multiple Sclerosis,” with a goal of accelerating research into personalized treatments for MS patients. This type of study collects repeat…

  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…

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…

Nonprofit organization, Accelerated Cure Project for Multiple Sclerosis, is launching a national campaign called iConquerMS, which was designed by and for multiple sclerosis patients to raise awareness of the importance of health data and supporting research. On the iConquerMS portal, patients can…