How Myositis Support and Understanding Association Adapts and Stays Nimble

By

Charlene Fernandez

May 08, 2020 • 3 min read

Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

The Myositis Support and Understanding Association evolved from a Facebook support group formed in 2010, to an all-volunteer, nonprofit organization empowering and supporting patients and caregivers across the country.

Jerry Williams created the organization, known as MSU, to ensure that patients and families dealing with inflammatory myopathies or myositis are never alone in their rare disease journey.

MSU hosted their inaugural MSU Empower Walk and Fundraiser in 2019, in memory of Robert Landman, a myositis patient. Lynn Wilson recalls that one of their support group members saw the event on social media and traveled from out of state to meet her and support Robert’s family.

“I was so honored and it was a very emotional time full of lots of hugs and tears. No one is alone in this journey with a rare disease and our ability to connect with people on a personal level is what makes us at MSU who we are,” Lynn said.

Adapting to patient needs during COVID-19

Both Jerry and Lynn admit that leading a nonprofit organization can be stressful. Due to the current COVID-19 pandemic, they had to quickly adapt their plans while providing education, awareness, resources and support to their community. MSU increased the frequency of their patient video support sessions, shifted focus to COVID-19 topics, and created sessions on how to stay safe and deal with social isolation.

May is Myositis Awareness Month – normally a time when MSU raises awareness and fundraises so that they can continue providing financial assistance to their rare disease community.

For 2020, instead of fundraising, Lynn and Jerry are holding an MSU Anti-Fundraiser. They are hoping to bring excitement and joy to their members by giving out electronic gift cards throughout the month of May. MSU also set up a fund to assist myositis patients with $1,500 to cover emergency household expenses and medical bills.

For Jerry, working with the caring, supportive, engaged and passionate myositis community on a daily basis is rewarding:

“It’s beyond gratifying to know we provide fellow patients and caregivers with the platforms, programs and resources they need to thrive while living with a chronic and debilitating rare disease.”

Whenever MSU receives a heartfelt note of gratitude and appreciation, it becomes palpable to both Jerry and Lynn how important and impactful their work is for the myositis community.

Finding innovative ways to elevate the myositis community

Patient needs come first to the MSU leadership, which is part of why they seek out partnerships that can amplify their work.

Recently, they partnered with the Global Healthy Living Foundation to give myositis patients a more prominent voice in the chronic disease community.

MSU is also proud to be the first myositis organization to recognize and endorse AllStripes’ research program to the myositis community.

“AllStripes thinks big and envisions a future for rare disease research beyond the traditional,” said Lynn. “We connected with them immediately, as they share the same values we have as an organization.”

Because of Jerry’s background in web development and design, what excites him about working with AllStripes is the technology. AllStripes’ “technology allows direct patient involvement in non-traditional medical research, and is truly empowering for patients who want to contribute to research,” he said.

When Lynn and Jerry are not coming up with innovative ways to connect with patients and caregivers or hosting webinars, you might find them reading an inspiring book.

High on their list for rare disease patients and leaders: David Fajgenbaum’s “Chasing my Cure” and Paul Kalanithi’s “When Breath Becomes Air.” Both are books that emphasize living life with purpose, which Jerry and Lynn find each day.

“The clock is ticking on any rare disease and at MSU, until that cure comes for myositis, we are doing what we can to help improve the lives of patients and caregivers in our community,” Jerry said.

Patients affected by myositis can find the opportunities available to them, including support, financial assistance, research, and other programs on MSU’s website and social media channels.

We know that every person's story is unique and deserves to be heard.

Join our early breast cancer registry to be counted and share your story with research.

Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

1. Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.

2. Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.

3. Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.

4. Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.