iConquerMS

More Answers About COVID-19 Vaccines and MS

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…

COVID-19 Vaccine Side Effects With MS Similar to Public at Large

Side effects upon receiving the COVID-19 vaccine in people withĀ 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,Ā a survey-based study found. The findings provide ā€œa reassuring pictureā€ for those who feel hesitant about…

Two Data-sharing Initiatives Launched Regarding MS and COVID-19

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…

Sara Loud to Lead Accelerated Cure Project for MS as New CEO

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

Diets and Supplements: Do They Really Help Your MS?

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,…

Accelerated Cure Project Teams with RealTalk MS for Weekly Podcasts

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.Ā In…

MS Patients Capture the Ear of a Pharma Company

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 SclerosisĀ (ACP) and pharmaceutical manufacturer EMD Serono have begun working together…

MS Groups Working to Advance Patient-Reported Outcomes in Research, Patient Care and Treatment Development

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

The Need for Follow-through with REAL MS

Iā€™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. Itā€™s…

Minority Engagement in MS Research

Engaging all types of people for research isnā€™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…

My Holiday Gift Wish

Itā€™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 Iā€™ve been around long enough to have most of the things I want or need. In fact, we have so much that at…

Discovering MS Research

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 doesnā€™t involve taking a pill or enduring an injection? Iā€™m talking about those…

The Importance of Patients Having a Voice in MS Research

I recently spent time at the annual meeting of theĀ Drug Information AssociationĀ (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…

Got Questions? iConquerMS Seeks Answers

If youā€™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…

MS Advocates Hope Better Data Will Mean Better Care

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 projectĀ called Real World Evidence Data, or RWE, is working outside of the…

Volunteers Needed to Make MS Research Project Meaningful

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…

REAL MS Inviting Patients to Join Research Project Aiming to Promote More Personalized Care

Accelerated Cure ProjectĀ is still recruiting forĀ itsĀ iConquerMSĀ project, REAL MS, an alreadyĀ 3,000-strong patient-powered research network for people with multiple sclerosis (MS). REAL MS (ResearchĀ EngagementĀ AboutĀ Life withĀ MultipleĀ Sclerosis)Ā isĀ a longitudinal research study, designed partly by MS patients themselves, intending to answer critical questions about individualĀ experiences of livingĀ with MS from among a large and heterogeneous group…

REAL MS Research Needs You

  You want to help find answers about multiple sclerosis but donā€™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…