DISPATCH FROM CAMP
A place where teens with find adventure—and each other
Every summer, teenagers living with MS gather at Oscar’s Teen MS Camp for a week of kayaking, campfires, and new friendships. But what keeps them coming back isn’t just the activities. It’s the chance to spend a week with other teens who understand what it means to live with MS.
Earlier this summer, ACP Chief Scientific Officer Stephanie Buxhoeveden attended camp as its first invited researcher. As a nurse practitioner and a person living with MS herself, she brought a unique perspective to the campers, and left with a deep appreciation for the connection, resilience, and sense of belonging that make Oscar’s Teen MS Camp so special.
Read the story behind the camp—and how one teenager’s search for connection grew into Mr. Oscar Monkey, the nonprofit behind the camp and other programs supporting children, teens, young adults, and families affected by MS.
COMING THIS FALL
A new, more personalized study search tool is coming to iConquerMS
Finding research studies that match your interests and are actively recruiting can be a challenge. This fall, iConquerMS will launch a new study search tool that gives you more ways to search, filter, and explore research opportunities based on your unique profile and the criteria that matter most to you.
Researchers submit their studies directly to iConquerMS, and our team reviews every listing to ensure it’s written in plain language and kept up to date. That means less time sorting through outdated listings or technical research jargon—and more time finding studies that are a good fit for you. As an added benefit, iConquerMS members will be automatically notified when new studies become available.
We’ll share more details soon, including how to get started. Want to be one of the first to try it out? Sign up to be among the first to explore the new tool.
UPCOMING EVENT
New iConquerMS Research Collaborative explores diet and nutrition in MS research
Want to shape the questions researchers ask about MS? The iConquerMS Research Collaborative is an event series for the MS community, and our first session focuses on diet and nutrition.
Join us for this free online event, which takes place on Thursday, August 13 at 2:00 p.m. PT / 3:00 p.m. MT / 5:00 p.m. ET.
Reserve your spot today—space is limited.
RESEARCH OPPORTUNITY
Perimenopause and MS
Are you a woman with MS between ages 45 and 60? Researchers at the University of Wisconsin-Madison want to hear from you. This national study, funded by the National Multiple Sclerosis Society, is exploring how perimenopause affects women with MS, with the goal of developing practical resources for managing this transition.
Participation involves three short online surveys over about 10 months (20-30 minutes each), with an optional follow-up interview for some participants.
PARTNER SPOTLIGHT
Meet the MS Coalition: a network that is more than the sum of its parts
You may not realize it, but there’s an entire network of MS organizations collaborating purposefully behind the scenes. The Multiple Sclerosis Coalition (MSC) brings together about a dozen national MS nonprofits, including ACP, to share resources, coordinate advocacy, and take on projects that no single organization could tackle alone—from commenting on legislation that affects the MS community to conducting research when important questions lack clear answers.
According to ACP Vice President of Scientific Operations Hollie Schmidt, who serves as the Coalition’s vice president, this level of collaboration around a single disease is rare. While many health conditions have multiple nonprofits, few have a structured way to work together, support each other’s efforts, and speak with one voice when it matters most.
Many MSC member organizations, including Mr. Oscar Monkey, We Are Ill, and MS Views and News, are led by people living with MS themselves, keeping the Coalition’s work grounded in what the community actually needs. If you haven’t already, explore the current list of member organizations. There may be a group there whose resources or services could help you or someone you know.
RESEARCH UPDATE
Your REAL-MS surveys are shaping research
The latest REAL-MS survey was a tremendous success. Nearly twice as many people participated compared to a typical wave, adding nearly 4,900 new survey responses to this ongoing longitudinal study by iConquerMS.
That data captures what it’s really like to live with MS over time, and it’s already being put to work. This fall, we are launching the all-new ACP Data Challenge Pilot, which invites researchers to dig into REAL-MS data using modern tools, including AI and machine learning, to move faster than traditional research methods allow. All data is de-identified, which means researchers never see your name or personal details, and shared only through a secure platform to maximize privacy protections.
We’ve also refreshed the REAL-MS dashboards, so you can log in and see your own data over time, including trends in fatigue, cognitive function, mood, mobility, and pain, and how you compare to the broader network. To view the updated dashboard: log into iConquerMS, go to the ‘My Data’ tab, then click ‘My REAL-MS Data.’
While you’re there, if you haven’t completed SymptoMScreen yet, now’s a great time. It takes about a minute and gives you a standardized way to track 12 common MS symptoms, from fatigue to mobility to mood, so changes over time are easier to spot and easier to share with your care team. It’s still open as part of the REAL-MS baseline surveys.
