MS Care Partner Connection: A One-Stop Shop for Caregivers in Need of Support and Information

WALTHAM, Mass., Feb. 12, 2025 /PRNewswire/ -- An estimated 1 million people in the U.S. have been diagnosed with multiple sclerosis (MS)¹ and it is likely between 30 and 50 percent receive some level of informal care from family and friends.² 

The MS Care Partner Connection website fills an information void for these many caregivers. This online one-stop shop, developed by the Accelerated Cure Project (ACP) for MS, with generous support from EMD Serono's Embracing Carers initiative, provides carefully vetted information about MS and managing life as a care partner for someone living with MS.

Craig Bianco is a member of ACP's Care Partner Advisory Board living in Maine, who has been taking care of his wife, Jennifer, since she was diagnosed in 1999. He talks about developing the website and how it can help care partners like him.

Why the MS Care Partner Connection? How does it help caregivers?

Craig Bianco: MScarepartnerconnection.com came about because there was really no specific resource for care partners caring for people with MS. As care partners, we universally felt that we're not only underserved but often ignored. So, there's a need for a one-stop shop for us.

Just as having MS is different for every patient, every care partner situation is different, so there's no universal type of help that everybody needs, and those needs change over time. Some just need to know the basics: what is MS? Maybe they just went to the first doctor visit with their loved one and received a diagnosis and a referral and little or nothing else.

We know it can be hard to care for somebody with MS and we think the content provided on MScarepartnerconnection.com can make your job a little easier. We care about you as a care partner and your partner with MS.

What sort of information is available on MScarepartnerconnection.com?

CB: As a care partner, you may feel like nobody ever asks you how you're doing. That's the first thing that's covered on MScarepartnerconnection.com: Caring for the Caregiver. This section provides support resources, organizations that help you find support groups near you, articles and guides for coping with workplace, legal, and emotional aspects of caregiving, and information about your rights.

Also, if you're going to be a successful caregiver, you'll need to educate yourself. That's why we included MS 101 for Care Partners. Many of us start out knowing little or nothing about the disease. That's how it was for me. We provide articles to read, as well as Jon Strum's RealTalk MS podcast and Can Do MS's videos. These cover everything from research to exercises, all kinds of things.

Just like for any job you do; you really need to have a toolkit. There's a literal toolkit for you as well. The more you know, the easier it's going to be for you.

The section on Navigating the System provides information and resources for dealing with the patient's physicians, their insurance company, their employer, and your employer.

We included Relationship Support because a lot of things will change in a relationship when someone has MS. It's different for everyone, but support is really necessary to thrive.

MS will affect most people's finances in some way, too, whether it's increased copays and medical costs, decreased job opportunities, or having to go on disability. We include information and resources on Financial Planning to help with these issues.

Can you describe the advisory board and how you selected the resources?

CB: The Care Partner Advisory Board is made up of caregivers for people living with MS, along with two psychologists specializing in MS and Sara Loud, CEO of Accelerated Cure Project.

We are all in different situations. I care for my wife, another board member cares for her adult daughter, another person cared for their mother. We have men caring for women, women caring for women, women caring for men. So, we represented probably all of the challenges that MS care partners encounter.

We brainstormed the challenges caregivers face, and what solutions are needed. And then we visited all these websites and read all of the content and then came back and talked about it. Some of it was redundant. Some of it wasn't really helpful or wasn't applicable to care partners for people living with MS. We chose the best and most trustworthy information. Some of it comes from well-known organizations like the National MS Society, government agencies, and the AARP. Some comes from smaller but very trustworthy sources like Can Do MS, the Caregiver Action Network, and insurance companies.

One of the features of MScarepartnerconnection.com is an AI Caregiving Expert. As we developed it, we felt it was important that every question we put in always came up with content we had already vetted. That happened every time.

What advice do you have for visitors to MScarepartnerconnection.com?

CB: When Jennifer became ill, she went from riding a bicycle and paddling a kayak to being wheelchair-bound and paralyzed. My caregiving journey seemed impossible and frustrating, which made me mad and depressed. But once I really accepted it and learned to be the best caregiver I could be, it got to be easier.

It was really accepting it and realizing that there are things you can do and there are things you can't do. You focus on the things you can do. Then life can be pretty good. I hope MScarepartnerconnection.com will help others feel the same way.

References:

1. 1.  MS Prevalence. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/about-the-society/who-we-are/research-we-fund/ms-prevalence#:~:text=Prevalence%20of%20MS,in%20the%20world%20have%20MS.
2. Maguire, R., Maguire, P. Caregiver Burden in Multiple Sclerosis: Recent Trends and Future Directions. Curr Neurol Neurosci Rep 20, 18 (2020). https://doi.org/10.1007/s11910-020-01043-5

CONTACT

Melissa Glim, MPH
Ogilvy Health
[email protected]

About Accelerated Cure Project
ACP (www.acceleratedcure.org) is a patient-founded non-profit organization dedicated to accelerating research efforts to improve the health, healthcare and quality of life of people affected by MS. The organization promotes scientific collaboration and accelerates research by rapidly and cost-effectively providing researchers worldwide with people, data and biosample resources they need to explore novel research ideas that can lead to cures and better care for people living with MS. The major programs of Accelerated Cure Project are the ACP Repository, the iConquerMS™ People-Powered Research Network and the MS Minority Research Engagement Partnership Network.

SOURCE Accelerated Cure Project for Multiple Sclerosis