Knowing it was just such an impactful experience for me. I remember I was in Ohio sitting at the Trader Joe's, and we were just talking, and it was just. Probably one of the reasons that I got involved with Hollie and IConquerMS is because I wanted to know more about how MS affected minorities, and I went onto the website, and then Hollie reached out to me, and we just had this amazing conversation. I was diagnosed with relapsing remitting MS in 2009, and really didn't know very much about MS. And Shawn, would you like to take it away? Last, but certainly not least? Lilly Stairs: What a beautiful sentiment. And again, Shawn and Hollie have been enormously, enormously influential in my growth and understanding of my role as an advocate. That's what's inspired me to continue with the organization and also participate in the Representation Network. But they have been so generous with that. And I'm still very much in the infancy, about two years. They share themselves and their own knowledge and experience to be openly, to guide you in that. And it's because of people like Shawn and Hollie, who inspire me on a daily basis to contribute more. From the moment that I was invited to join the organization, everything was about, how can we bring everybody to the table, not taking for granted that things are the way they are, and they're gonna stay that way.Īnita Williams:Ěnd I would say that my advocacy journey really did start with IConquerMS, the Accelerated Cure Project. I am an MS patient.and what I really love about the organization we're involved in is not just the patient-centered nature, but the emphasis on inclusivity. Īnita Williams: I got involved with the Accelerated Cure Project. My last name is Williams, and I'm always last, so. And Anita, I'm gonna pick on you first, simply because you're first name starts with an A, and it's the beginning of the alphabet.Īnita Williams: That's a change. But first, Anita and Shawn, I would love for you to introduce yourselves. And so, I'm super excited to hear more about what you guys are doing. And I think it's something that so many different clinical trials and patient advocacy groups can learn from, because really, across the board, not even just in MS, diversity in clinical trials is a major pain point in the industry. So, that's why we decided to launch this initiative. And so, we wanted to do something about that so that we made sure that the research was representative of all groups with MS and that the benefits of research would apply equally to all groups. Hollie Schmidt:Ěnd I am the project leader of the MS minority Research Engagement Partnership Network, which we founded because in our own activities, we realized that we did not have very balanced representation of our research participants both IConquerMS and the repository across different racial and ethnic groups. We also have a repository of blood samples and associated data that we provide to researchers who are looking at some different aspects of MS, like the causes, or disease mechanisms, or potential treatments. And I'm the Vice President of Scientific Operations, so some of the things that we do or have done in the past include building a research network that focused on patient-centered research, called IConquerMS. This is a non-profit organization, founded. So, I am with the Accelerated Cure Project for MS.
So, Hollie, I'd love to kick it off with you. And so, I am going to take a moment to let them introduce themselves, tell you a little bit about them and what brought them to this point to be involved in this network. And we also have Anita and Shawn, who are both patient advocates, but also advisors to the project. Lilly Stairs: So, with us on the podcast today, we have Hollie, who is the VP of Scientific Operations at the Accelerated Cure Project for MS. So, I'm really excited to be tackling the topic, and they're all coming from the Accelerated Cure Project for MS, and we're going to talk specifically, today, about the MS Minority Research Engagement Partnership Network. They're doing something really interesting that we haven't necessarily seen before, and we haven't had the chance to talk about much on our podcast. I am elated today that we have three amazing women with us who are going to chat with us about their work in the MS space. (You can subscribe to the podcast at Apple Podcasts, or listen to it with the media player above). Our latest Patients Have Power episode called "Representation Matters: Increasing Inclusivity in Research". Hello everyone, and welcome to The Patients Have Power podcast.
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