November 20, 2023 News by Steve Bryson, PhD iConquerMS expands research efforts to focus on MS caregivers 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…
January 7, 2022 Columns by Ed Tobias 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…
November 22, 2021 News by Margarida Maia, PhD 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 āa reassuring pictureā for those who feel hesitant about…
July 17, 2020 News by Forest Ray PhD National MS Society Invests $16M in Disease Research, Physician Training The National Multiple Sclerosis SocietyĀ 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…
April 15, 2020 News by Mary Chapman 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…
December 11, 2019 News by Mary Chapman 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 organizationās research focus. Robert McBurney has stepped down as president and CEO after eight years to become ACPās first chief research officer. He will continue in the position of research lead for the…
May 10, 2019 Columns by Ed Tobias 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,…
January 10, 2019 Columns by Laura Kolaczkowski STEP for MS to Study ‘Telerehab’ Exercise Programs 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…
November 29, 2018 Columns by Laura Kolaczkowski iConquerMS, National MS Society Collaborate to Amplify Patient Voices I am excited andĀ 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…
November 19, 2018 News by Mary Chapman Accelerated Cure Project, National MS Society Pair to Advance Research, Patient Input 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’sĀ iConquerMS, a research initiative to increase the engagement…
November 7, 2018 News by Mary Chapman 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…
October 12, 2018 Columns by Ed Tobias 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…
June 1, 2018 News by Patricia Silva, PhD 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…
April 26, 2018 Columns by Laura Kolaczkowski The Need for Follow-through with REAL MS Iām 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. Itās…
February 1, 2018 Columns by Laura Kolaczkowski Minority Engagement in MS Research Engaging all types of people for research isnāt 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…
January 18, 2018 Columns by Laura Kolaczkowski What We Can Learn from Longevity’s Link to Quality of Life 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…
December 21, 2017 Columns by Laura Kolaczkowski My Holiday Gift Wish Itās 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 Iāve been around long enough to have most of the things I want or need. In fact, we have so much that at…
October 27, 2017 Columns by Ed Tobias Patients and Neurologists Team Up to Gather MS Therapy Data 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…
October 5, 2017 Columns by Laura Kolaczkowski 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 doesnāt involve taking a pill or enduring an injection? Iām talking about those…
August 3, 2017 Columns by Laura Kolaczkowski 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…
July 27, 2017 Columns by Laura Kolaczkowski Got Questions? iConquerMS Seeks Answers If youāve 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…
March 10, 2017 Columns by Ed Tobias 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…
December 9, 2016 Columns by Ed Tobias 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…
September 21, 2016 News by Patricia Silva, PhD 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…
August 25, 2016 News by Charles Moore Patient-led Study, REAL MS, Invites Adults to Help Advance and Direct MS Research An innovation in multiple sclerosis (MS) research has been launched byĀ the iConquerMSĀ initiative ā a longitudinal, prospective study called “REAL MS,” an acronym for “Research Engagement About Life with Multiple Sclerosis,” with aĀ goal of accelerating research into personalized treatments for MS patients. This type of study collects repeat…
August 15, 2016 Columns by Laura Kolaczkowski REAL MS Research Needs You You want to help find answers about multiple sclerosis but donāt 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…
July 11, 2016 Columns by Laura Kolaczkowski Patient Engagement in Drug Development: DIA 2016 When I see a new drug for MS come to market, I only think of the company behind that product ā 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.Ā I never stopped to…
February 12, 2015 News by Patricia Silva, PhD Accelerated Cure Project to Increase Participation in MS Trials Nonprofit organization,Ā Accelerated Cure Project for Multiple Sclerosis, is launching a national campaign called iConquerMS,Ā which was designed by and for multiple sclerosis patients to raise awareness ofĀ the importance of health data and supporting research. OnĀ the iConquerMSĀ portal, patients can…